Tag Archives: NHS

Bromley, Greenwich & Lewisham BAME Carer Forum July 2021

Welcome to a brief update of my BAME carers forum for the boroughs of Bromley, Lewisham and Greenwich. The focus is one of the 6 carer forums that focuses on discussions, awareness and campaigns regarding unpaid carers from an ethnic background specifically caring for a ‘loved one’ suffering mental ill health. Forum members do not have to have someone using the services, it could be they are caring for someone who might not be using the services of South London & Maudsley NHS Foundation trust or Oxleas NHS trust.

The BAME mental health carer forum update for July had the following speakers to engage with carers, although not in order.

  • Lola Jaye (psychothearapist, author, speaker) – Why race matters when it comes to mental health
  • Emma Wakeman (St Andrew’s Healthcare)- on The Missing Voices: Carers’ Experiences of Section 17 Leave (Mental Health Act 1983)
  • Kuldip Kaur Kang (West midlands trust) – on Religious and cultural needs of BAME mental health inpatients request
  • Rachel Nethercott – Carers UK focus on diversity unpaid carers
  • Leonie Down (SLaM Lewisham Head of Occupational Therapy and Partnerships Lead ) – Update on Patient Carer Race Equality framework
  • Dominic Parsons – Bromley, Lewisham & Greenwich Mind on their diversity initiatives.
  • Professor Shirin Rai from Warwick University – On the Impact of covid-19 on bame carers

Judging by the speakers, you can see the BAME carers forum is held online and is also attended by mental health NHS trust staff working to understand the issues that affect ethnic unpaid carers and patients.

Lola Jaye Presents

Lola started her talk about how those from ethnic backgrounds experiences racism in everyday life, she pointed out that a lot of people at the carers forum may remember last year, where globally the Black Lives Matter movement began a lot of traction, plus several incidents that happened in the final or the Euro 2020 football match.

Many things have pushed the importance of diversity to the forefront including the impact of COVID-19 on ethnic groups, plus how it forced many to be online at work. Lola talked about the impact of racial trauma and it’s affects on mental health. Lola gave us several examples e.g. How many times have we heard a racist joke? How many times we seen racial slurs on the walls or been a victim of overt or even covert racism or racial profiling, sometimes even unconcious bias has an impact on diverse communities.

Lola mentioned as a psychotherapist she has noted many of her clients experiencing issues and a feeling of powerlessness because of what they have to be able to live with and these are things that cannot be ignored especially if health and social services have to takle the problems. The community must be a part of it.

Lola moved on to querying “what is self worth” to forum members. Lola raised how the media has bombared people with messages that challenges their self worth, especially young black people. Certain things in the media has lead to racial trauma. There were examples of you are British to the point where you serve the country and then can actually end up as the ‘other’ where you could be the ‘N’ word. Lola pointed out the positive experiences of the nation coming together to support black players in the Euro football campaign, but unfortunately incidents led to the importance of tackling racism online and offline.

Lola moved on to talk about the large scope of battles ethnic people have to take on. Discrimination globally has led to black people taking on more challenges be it inequalities in health and social care, racism, lack of resources regarding institional racism and more. Lola suggested people need to pick their battles because to tackle so many things will cause a mental strain. We would have to choose our battles. Discrimination can come as Little things, or big things? that those from ethnic backgrounds have to live with every day and god knows how the impact has affected those who unfortunately loose their mental health. Lola spoke more about institional racism in education, the criminal justice system and other places and why it is so important organisations especially health and social care become anti-racist organisations, but they need to work with the community although there is a problem with a power imbalance.

More of Lola’s work can be found on the following sites.

https://www.bbc.com/future/article/20200804-black-lives-matter-protests-race-mental-health-therapy

https://www.adventureinblack.com/blog/mental-health-in-the-black-community-during-covid-19

Kuldip Kaur Kang presents on Religious and cultural needs of BAME mental health patients.

Kuldip who is a social worker for a west midlands NHS trust presented on her research about patients detained on an impatient setting. Emma conducted a lot of interviews and stated that it can be a challenge to know what issues are affecting mental health patients due to not understanding the reality of things.

The one of the main reason Kuldip chose her research was due to her ethnic background and the experiences she has had in the past. She felt concerned and wanted to highlight such issues, but was given the freedom to do so. She wanted to highlight the relation to our religious and cultural identity, but for our benefit at the forum she focused on the carer’s aspect of her research. Kuldip mentioned that although stats can be boring, they are useful in highlighting and evidencing research and it came to no surprise to people that stats show that people from a BAME background are detained from the mental health act is this is disproportionatly high.

Kuldip mentioned about the pressures on the ward, which can led to decisions overlooking patients culture and religious needs. These could be the high turnover on the wards, staff under pressure and lack of leadership. Religion is one of the things that can be important to inpatients, because of how they cope with their mental health although religous views can sometimes blur mental health understanding. Religion and cultural needs cannot be overlooked on a mental health setting. Kuldip spoke how it is so important to involve families and carers in their ‘loved ones’ care because they are more likely to understand the cultural and religous needs especially if the mental health service is under pressure already it would make sense to increase involvement from the patient’s circle of support network.

Kuldip also spoke about the importance of training staff to be more aware of patients needs, but she did stress that when staff feedback about training that they were not sure how to tackle certain issues. A good example of a patient washing their hands to pray, but was challenged because they suffered OCD. As mentioned religous practices of patients can blur into their mental illness, but it might be the one last thing the patient was holding on to. Kuldip also mentioned her research did include other ethnic communities from europe who used the services.

It was mentioned how staff on the wards found it so helpful that families and carers could help communicate cultural and religious needs on the wards, especially if the patient just could not communicate their needs. Kuldip did admit confidentiality did get in the way, but there were good reasons for this. Kuldip gave her recommendations of her study to the forum, which were well recieved.

See below for more of Kuldip’s work

https://thinkahead.org/news-item/research-by-think-ahead-social-worker-finds-that-inpatients-religious-and-cultural-needs-often-go-unmet/

Leonie down updates on the Patient Carer Race Equality Framework (PCREF)

Leonie Down who is the Lead Occupational thearpist for Lewisham under SLaM started off by mentioning that PCREF is something that South London & Maudsley are focusing on in South London, and there are other Mental Health trusts around the country that are also involved in this. These being East London Mental Health trust, Birmingham & Solihil NHS Trust and Manchester mental health trust are involved in the NHS England & Improvement pilot.

Leonie mentioned that in the context of the community around inequalities and systemic racism, this gives hope, to people’s idea of trying to really challenge the power of organizations that proposes these big NHS sites, and sort of takes through a process of maybe the next year or so to identify how NHS can be better and addressing inequalities. Leonie felt it could demonstrate competency within all of the work SLaM do, so she thought maybe it’d be helpful summerize how staff, patient & carer and the community at large work together to identify what competencies on how do well SLaM is doing on BAME experiences of services.

Leonie updated on how we can have an equality in needs, which is being delivered in any partnership with the people that are seen as stakeholders. Secondly, she felt it really educational for the current meeting, discussing excellent knowledge, awareness, and cultural awareness. SL&M are going to find different experiences and initiatives and come up with a position where in February next year, they can kind of launch a proposal on what to work towards.

Emma Wakeman presents on The Missing Voices

Emma talked about the paper she wrote and the 4 main conclusions and findings which came out of the research paper.

https://www.york.ac.uk/spsw/news-and-events/news/2021/s17mha/

The first finding was about the emotional impact of anyone who’s caring any shape or form on how they can relate to emotional impact with the fact that carers felt their voices were not picked up enough.

If things did not go well for carers or they thought that they have been let down, then complaints would certainly appear in the services.

The second finding was on social systems and the affect of what happens if a person was taken out of their social system, what would be the result for carers. Emma mentioned the type of section had a major impact on how patients coped when they were removed from their social system.

The third point was on how carer’s sacrificed their time and energy into providing care and how section 17 dealt with such sacrifices. The 4th part of the paper was examing what support was given to carers and how sometimes there were challenges on getting that support.

Rachel Nethercott presents on Carer’s UK BAME carer’s initiatives.

Rachel Nethercott opened up her talk about how she works with CARERS UK in the policy and Public Affairs team. They have funded by the COVID-19 support fund to run a project with carers trust for Three years, and they will be looking at the experiences under representative carers from marginalized backgrounds. So those are LGBTQ carers, Black and Asian and older aged the carers particularly those who are digitally excluded and also carers of faith. So those groups are part of the project because they believe in dis-proportionally affected by the pandemic. The project itself will look at experiences during COVID and the measures beyond COVID.

Rachel wanted to talk about the BAME carers part of the project and how they are going to be taking a look at building on existing research for the project. Carers UK want to be able to work with services, make recommendations on areas to improve and how best to develop any good good practices that is working well. Carer’s UK also want to learn from those services and practices that do include carers. So for the three years to both carer support services and health and social care services, we hope those services will be more accessible as being tailored, beneficial and with recommendations.

Rachel gave an outline of the project and also allowed attendees to ask questions or feedback on the community project services.

Professor Shirin Rai from Warwick University presents

Professor Shirin wanted to share with us their new research. Prof Shirin did point out there is a problem of BAME communities not being involved in research, but also a lack of BAME communities carrying out research regarding race and mental health.

Her project is called “care, caring, and carers” which is why she thinks the main aim of our project is really to look at sort of care for older people in BAME communities, in Coventry and Leicester which are two diverse and wonderful cities. The research will look at the conditions and impact of COVID.

Professor Shirin really appreciated Lola emphasised the connection between Black Lives Matter movement with the experiences of BAME carers, because we all know the crisis affecting BAME communities, this has been experienced so many times.

Professor Shirin wants the project to try to connect with the carer and the caree. So for all the peoples care, the research also wishes to include both unpaid carers and paid carers. Prof Shirin feels the government has a habit of not funding well for unpaid carer while at the same time trying to learn from the community.

For more information about Professor Shirin’s new research please check the link below

https://warwick.ac.uk/newsandevents/pressreleases/exploring_the_impact/

Thanks for checking out my brief update

Lewisham Mental Health Carers forum July 2021

Welcome to the July 2021 update of my Lewisham mental health carers forum. The forum focuses on engagement for families and unpaid carers who care for someone suffering mental ill health. The ‘cared for’ does not actually have to be using mental health services, but it is important there is a platform for unpaid carers to learn about mental health support, understanding mental health and what is available for carers themselves.

Speakers for my July carers forum were:

Phoebe Averill – PHd Student at Kings College
Polly Pascoe – Lewisham CCG
Carla Fourie – SL&M director of social care

  • Phoebe Averill presents on her latest study.

First to speak was Phoebe Averill who is a PhD student at King’s College. She is working with South London & Maudsley NHS Trust (SL&M) on a research study and she wants to hear carer member’s thoughts and also invite anyone that might be interested in taking part in the research study. She is looking at safety of care in the community mental health services. Phoebe gave my forum a bit of background information about what the problem is. Basically safety in general hasn’t really been given much attention in mental health services. Historically, when you compare it to kind of physical health care services, where we’ve now got quite a good idea about how we can make care safer, what types of interventions and strategies might be needed. Still, there is a small kind of body of research and interventions coming out more recently. These are mainly focused on inpatient mental health services and unfortunately community mental health services have been a little bit left behind, even though that’s where the majority of people who are actually receiving care.

In recent figures, people were using community mental health services rather than inpatient services. So it’s really important that safety is kind of better understood in the community context, so that strategies can be developed to make the services safer. And that’s what she is trying to get started with this research research. Pheobe is currently trying to speak to family members and carers of adults who are using community based mental health services, to find out a bit about what they think about what safe and unsafe care means in this context, because it’s not really well understood. This is due to the types of safety issues that the carer is worried about in relation to the person that they support.

The way the study works involves speaking to her in a either a one to one interview or group discussion with other carers if there was interest from several people in taking part. And there aren’t really any right or wrong answers. It’s really just about hearing carer’s point of view. Carers have so much knowledge about the person that they support and their experiences of care. And it’s just really important that their views are incorporated into any efforts to, to make services safer.

  • Questions from carer members.

One question was focused on the issues of patient’s age. The carer felt that a 75 year old patient does not have the same issues you’d have with a 25 year old and they were curious to know, what Pheobe would be doing for older adults when it comes to community work? Especially for the carer because there’s a lot of issues with older carries with physical issues. How will the research be monitoring those patients or those carers?

Pheobe responded that unfortunately for this study, we’re only looking at sort of general adult services. So we’re Other than older adult services, like you mentioned, it’s not because it’s any less important. It’s just that at the moment, there’s the most kind of research knowledge in adult in adult safety. so future studies would be needed to look at older adults, because there’s like you mentioned, there’s lots of really important safety problems there.

  • Statement from myself

After some debate I mentioned that one thing in regards to research is that whatever is found out could lead to recommendations, usually, most research initiatives tend to recommend some findings that will have this influence services. A lot of people feel research is done for either funding on does not solve service issues, but I pointed out researchers are not in charge of mental health services.

  • Polly Pascoe – Lewisham CCG Presents

Polly spoke about her work within Lewisham Borough Council and southeast London CCG. Her role is it was called integrated Commissioner for mental health pathways. In essence, one of her key roles is getting us to use future systems across mental health care, while it’s occurring across healthcare in general, her focus is on mental health especially within Lewisham. This is kind of where we’re hoping to head moving forwards. The previous system, that being health and social care worked separately regarding statutory and voluntary. Such as Provider sectors were working separately and sometimes even competitively where age groups were handled separately, and such services provided different levels of focus and funding. Conditions were often handled separately, and there was a strong focus on outputs as in numbers, rather than changes necessarily. So there used to be a strong focus on reaching particular targets, on how many people were seen and how many people were funded by CCG.

Now Lewisham CCG have made some definite headway in Lewisham to becoming much more integrated in the way we do things. Of course it’s a journey. So we’re certainly not there yet. Still, Polly was sure a lot of people will have experienced a number of different frustrations around how the system’s working. She feels we are becoming a more integrated health and social care system. Where we are working much more closely with our sector providers. It’s not just the big players e.g. (SL&M), Lewisham CCG is also connecting into our community organizations and age groups do remain relatively distinct. Often the way we do things will mirror that which isn’t always appropriate until the impacts of concurrent issues are understood. So we do have a clearer idea of how different conditions work with each other, but they are still seen often as separate conditions.

At Lewisham CCG they are certainly moving towards a focus on improving outcomes, but they do still have quite a heavy target focus. Those targets are becoming more appropriate as Lewisham CCG move forward. What they are heading towards is a future system where health and social care workers one, and Lewisham CCG are focused on the individual rather than on our kind of organizational boundaries, let’s say, Lewisham CCG want to move between statutory and voluntary services. So between the NHS Trust’s and then any services working in community to be visible, Lewisham CCG don’t necessarily want people to feel they’re being handed off to different places all the time. And they want people to have their personalised journey where movements between that journey feels very seamless. They also want to move to an all age approach where the CCG see the individual as experiencing certain things throughout their lifetime.

So this is also moving beyond comorbidity, not just recognizing people’s potential health issues, but understanding wellness, and looking at their life, and how the CCG can ensure that the way of living and that the way people around them, treat them and work with them ensures optimum wellness, rather than just the absence of ill health, which is one of Polly’s key findings on commissioning and delivery. So this is the way that the CCG design and make services happen. Lewisham CCG deliver those services to people where it is outcomes based and focused. So we want to move away from numbers of people, and move towards the difference we make to people. So that’s the kind of very much that future system Lewisham CCG is working towards. Polly admits she has one very small part to play in a really huge system. And, in essence, this is kind of where she sits in and amongst everything else. Her area is primarily adults and older adults. So she continues to do look at these two areas, predominantly for herself and her team.

  • Carla Fourie – SL&M director of social care presents

Carla started off talking a bit about herself and when she was appointed in February this 2021, although some people will say that they sure they saw her prior prior to this year and that’s true. She started on secondment with the trust last year literally just a few weeks before the initial lockdown. Eventually the role was made permanent, and she applied for it. She was then formally appointed in a full time role in February this year. Carla looked at putting the slides together and thinking about how she could describe what her role is at the trust, she decided, looking at kind of the role to group it into four key categories. As the most senior social worker in the trust, she works closely with NHS trust board and she works closely with SL&M senior managers, to bring a social work perspective, to the NHS trust. So when we look at our multi professionals within the trust, we’ve got our doctors or nurses and OTS, etc.

In the end Carla’s role is to bring the social worker perspective at a the senior level, she has also the responsibility to work across the trust with the different local authorities, and to ensure that SL&M avoids working in silos, so there is partnership working, and to ensure that the Social Work offer is provided to people with mental health needs, and to help people become in terms of prevention. Her other role is also that trust wide responsibility for safeguarding so the heads of adult and children’s safeguarding reports to her including the areas for domestic violence and abuse, prevention agenda. She also has a trust wide responsibility for the mental health laws that include areas such as mental health capacity, Human Rights Act, etc. In terms of just tying back to the social work, leadership role, apart from working closely with a board, she also has the responsibility to ensure that our social work workforce, social workers that’s directly employed by the trust, are also professionally well supported.

Carla spoke in terms of support to carers and families, where she thought, were important just to highlight again, on a slide where the work at that the trust is doing overall, in terms of manpower strategy, and that’s very much also founded on the triangle of care, where SL&M sees the carer very much as a partner in the care that SL&M provide. There’s a lot of information that SL&M has developed as a trust and under the leadership of Gabriel Richards, who leads strategically on the carer’s agenda. SL&M has got a carer’s charter that is highlighted. SL&M also provides information in their families and carers Handbook, and also information leaflets, posters shown in the blog regarding carers rights under the care rights, writing, carers assessment. SL&M also has information about confidentiality and sharing of information.

SL&M also provide information to nearest relative where we have useful nearest relative leaflets as well on what is provided to carers. One of SL&Ms duties is to try To ensure that ‘cared for’s relatives are informed and consulted with, particularly when there was a Mental Health Act assessment under Section two of the mental health act. The approved mental health professional has a duty to inform the nearest relative under Section three, where the relative has the power to object to someone being detained to a loved one being detained under the Mental Health Act. The nearest relative can also ask for an IMHA, which is an independent mental health advocate to see the patient and the nearest relative can request a mental health assessment, which she thinks sometimes nearest relatives not everyone is aware of that in certain circumstances where it’s been really difficult or challenging to access for whatever reason. So whilst the local authority is to consider the assessment under the Mental Health Act, or the rights and powers of a nearest relative. The nearest relative can write to the associate hospital managers to request for discharge. Sometimes that’s out here too, but in circumstances where they’re responsible clinician disagrees from a clinical point of view, they can roll that request up to the hospital managers who will review that decision as well.

An nearest relative can also appeal to mental health health tribunal, and they’ll set up some circumstances where nearest relative feel that they are not able to take on this role, because it does have a lot of power and responsibility with it. And sometimes some families feel that if someone that’s been identified as a narrows relative that may impact on relationships with their loved one.

This concludes our Lewisham MH carers update for July 2021

SW London MH Carer Forum June 2021

Hello fellow unpaid carers. This blog site is geared towards those who support or look after someone suffering mental ill health. I run a number of carer-led expert by experience forums, which focus on unpaid carers regarding engagement from services. Most forums tend to have speakers to engage members regarding mental health system changes or discussing carer awareness.

For the South West London carers forum the following speakers were

NHS South West London CCG – Understanding health Commissioning for carers
Dolly Sen – Mental Health Patient/Carer champion
Matthew Mckenzie (myself) – The importance of carer peer support

As you might be aware, clinical commissioning groups are merging in their own region as part of NHS England’s long term plan, because my group covers a large area, it made sense for the comissioners to speak to carers from different boroughs in South West London.

South West London CCG presentation

First to speak was Caroline O’Neill who is the Lead Engagement Manager and covers Kingston & Richmond from NHS South West London CCG, we also had John Atherton in attendance who is the Director of Mental Health Transformation for SW London CCG.

John started off the conversation on what the plans are for the rest of the year and going forward. John explained how the 6 CCGs formed in five commissioning groups in South west London. They are responsible for planning, commissioning and buying most of the NHS services in the south west london area. That means hospital care, GP surgeries, rehabilitation clinics, mental health support, learning disabilities and many others.

The boroughs they cover are

Croydon
Kingston
Merton
Richmond
Sutton
Wandsworth

The CCGs have a healthcare budgets of over £2.3 billion, although carers who attended the June’s meeting were interested in the CCGs mental health pathways and how they were going to include families and carers.

John explained the importance of health checks as those with mental ill health often struggle to get physical health checks and support. John mentioned what happened in the past is people were encouraged by their GP go get a physical health check each year. It is important the CCGs continue to push this forward because there are some service users who had not had a good experience in the past, or they don’t believe in health issues, so they are encouraging people to check at their practice.

A carer reminded the CCG representatives about how difficult it is for people have mental health difficulties to travel especially using public transport. They wondered how this will affect people accessing mental and physical health services for check ups.

I also asked a question to the CCGs regarding is there a simple view of the commissioning structure? Because we have got CCGs doing stuff in 6 boroughs, and then you’ve got merged CCG? So how do people sort of feed into each other on what is going on? The representatives spoke about their governing body and who is on it.

Another carer was concerned about those with learning difficulties with poor health accessing recovery colleges and wondered what the South West London commissioners were going to do about it.

The representatives were pleased to hear SW London and St Georges were promoting the carers forum, but the CCGs also wanted to include our group on developments of mental health services, as the group stressed the carers should be consulted and involved when it comes to service provision. All too often CCGs struggle to get a good number of carers interested in what they do. It could be an added benefit that carers poke their noses into what is being comissioned and why. This is because carers have a vested interest in the health of who they care for, plus carers do actually use some CCG services which could be Increasing Access to Psychological Therapies. A carer member of the group was concerned about the number of carers not being identified and referred to carer services and groups.

An interesting point of the discussion was finding out who were the mental health leads from each of the 6 boroughs, although there is a lot of work needed in developing primary care networks, because some members feel some GP surgeries could learn a lot from other GP practicies.

Dolly Sen presents

It was requested by carer members for Dolly Sen to talk with us at the forum. Dolly Sen is a service user survivor and a carer and has been fighting 20 years for human rights. Dolly mentioned that over the years while trying to keep mentally well, she has been using energies to focus on art, film, performance and even talking about her experiences at other events.

Dolly Sen

You can find more of Dolly’s work below.

https://www.youtube.com/user/dozzyangel/videos

A large part of Dolly’s activism is around the treatment of mental health users, especially around the problems with benefit payments or DWP. She is quite busy working to improve the mental health system in another area where she has moved to. Dolly admitts there are times when nothing can be done on someone’s health and situation, she feels sometimes it is best to be a witness.

A number of questions from members at the forum were interested in how their mental health trust is working to involve more carers in their involvement register. They queried with Dolly about involvement and activism.

Lewisham Mental Health Carers forum June 2021

Welcome to the June update of my Lewisham mental health carers forum. For the month of June my MP Janet Daby who attended to speak to unpaid carers and update us on what Lewisham has been doing for unpaid carers since carers week 2021.

Also in attendance was Jo Power who is the Liaison Officer for the Parliamentary and Health Service Ombudsman.

Cath Collins – Carer support worker presents on her role.

Before Janet spoke about unpaid carers, I felt it important that Cath Collins had a chance to speak about her role and her passion to support mental health carers. Cath Collins used to work for SL&M as a carers support officer, but is now employed by Lewisham council, but in a similar role.

Cath spoke about what she is employed to do and what she has been doing. Her remit is with the adult community mental health team. So she does not work with CAMHs, the children, adolescent teams, the older adults. She spoke about how we have primary mental health care teams in Lewisham, which is part of a new transformation of services, that should be aligned to GP practices.

Cath also spoke about having community teams where people have a longer period of support who suffer from serious long term mental health conditions. She mentioend we also have specialist teams in between, which are Early intervention services, which is for people in the first episode of psychosis, regardless of what age they are SL&M also have a personality disorder service.

Cath’s remit is to work with the teams to look at several things where one of them is to look at the information that they give to families and carers. These being are they getting the national up to date information? Other things focus on is such info good information about diagnosis? how to care for someone with a specific diagnosis? being involved in discussions around the care? If not, then why not? and how we could work on it?

With advice and information service, Cath reminded that they have got a group tonight, which is a mental health care support group where people can attend and speakers will go through important topics.

Janet Daby section.

I consider it very important MPs and those who lead on social care engage with those who are vulnerable in the community, especially if the group is grassroots and self-led. I am sure there are reasons why representatives would not want to speak to vulnerable groups, but those reasons are very few and far between.

It is also a two way thing, not only is it important for MPs to link with unpaid carers, but also unpaid carers understand the importance of forming relations. Too often I hear from unpaid carers that they are in an urgent situation and wish for counsel, which is fair. However I wonder in the back of my mind if something could have been done before things got out of control. It might be usually up to carers to keep their ears to the ground and find out what is really in store for them, even if they have the unpleasant task of trying to hold health and social care leaders to account.

Janet mentioned that Carers Week, which took place this year from 7 – 13 June, is an important opportunity to recognise, value and support unpaid carers. She felt that the Government must properly fund respite breaks so carers can put their own needs first, and ensure they can continue to provide vital, life-saving care and support. She knows that this is something that both Carers UK and the Association of Directors of Adult Social Services have been calling for.

Janet remains concerned that until there is long-term investment in social care, unpaid carers will continue to be overwhelmed. After a decade of cuts to local government, £8 billion has been lost from adult social care budgets and too many families have been left to cope without the support they need.

The Government first promised to publish its plans to reform social care over four years ago. Despite repeated promises, Ministers have still not brought forward any legislation, new funding, details, or timescales for reform. The recent Queen’s Speech, setting out the legislative agenda for the year ahead, was absent of any detailed plans.

Janet continued speaking to our group about being happy to attend and meet with us even if it was more than once a year. She spoke about her plans and concerns about the SL&M’s Ladywell unit and her plans to raise queries and questions with the chair of SL&M. I asked questions about Lewisham’s focus for carers and how those who lead on social care could engage with our group where Janet mentioned a few people. As a group we have been struggling to get engagement from those who lead on social care, but in other areas of London it seems easier to get that engagement, other carers have mentioned it is not worth the hassle, but I feel it is important to get such engagement even if they respond with bad news. Nothing is worse than being ignored and left to try and support others going through isolation, exhausting and feeling they are not being heard.

Jo Power Ombudsman presentation

Jo spoke about The Parliamentary and Health Service Ombudsman and the focus was on Who they are, what they do. Jo spoke about how the Ombudsman works and makes it’s decisions. Basically the PHSO was set up by Parliament to provide an independent and free complaint handling service. It is the final stage for complaints about the NHS in England.

The PHSO staff considers on the following.
– can they investigate?
– should they investigate?
Other factors include
Suitable complainant
Time limit
Legal remedy
Another organisation that could be involved.

Jo also spoke about how the PHSO gave’s evidence in the form of.
– Hearing from both sides
– opportunity to tell the PHSO what lay behind clinical decision making
– clinical records
– CCTV, phone records
– witness statements/visits/interviews

There was also an explanation about how the PHSO investigate complaints. As they look to see if what happened was in keeping with relevant regulations, standards, policies and guidance or established good practice. If it wasn’t, the PHSO look to see how significant the shortfall is and the impact that it has had and, if it has caused hardship or injustice, if that has that already been remedied by the organisation.

The PHSO also work with the following organisations.

Stats and figures were given for the carers group to digest from 2018/19

112,262 enquiries received
82,998 enquiries resolved through advice or re-direction

28,841 complaints handled by casework teams
24,183 complaints were not ready for us
5,658 decisions were made including:
746 investigations upheld
871 investigations not upheld
3,597 assessment decisions
444 resolutions

The PHSO also updated us on what they have been doing recently. As from last year they ran a public consultation to get people’s views on the draft NHS Complaint Standards. The consultation generated a lot of interest and feedback. On 24 March 2021 they published a report that set out the responses they received and explained what they did and the changes they made in response to the feedback.

There was a long Q&A session regarding the PHSO’s work and how the focus can be influenced by unpaid carers. This was the short update for my Lewisham’s mental health carers forum for June.

Lewisham BAME MH Carer Forum September 2020

Welcome to the brief update of my Lewisham BAME Mental Health carer forum which is aimed at minorities caring for someone with a mental illness in the borough of Lewisham. The September forum looked at engagement from South London & Maudsley’s IAPT service (Ellen Heralall) and also engagement from the SLaM QI Peer Project Worker (Richard Mortan).

We were joined by the regular carer members and also newer members including some from my other carer group in Greenwich. There were also some members from community groups including African Advocacy Foundation, Bromley, Greenwich & Lewisham Mind’s community wellbeing group and others.

We were also joined by the comms rep from Birmingham Community Healthcare NHS Trust who was interested on BAME developments in the area. We were also joined by Leonie Down from SLaM who is developing partnerships across Lewisham as part of the transformation of mental health services. Part of her role is to bring together a community strategy for service users, staff and carers within slam.

Ellen explained more about the IAPTs service which means Increasing Access to Psychological Therapy. The IAPTs service has just been running over a decade. They are based in primary care. So they operate very closely with the GPs and operations within GP surgeries. The IAPTs is also now part of the national framework, which is provided by NICE (National Institute of Care and Excellence) which recommend treatments. The aim is to provide easy access for the community to receive psychological therapies for depression and anxiety primarily, but not complex mental health conditions.

The referrals would come up from the GP and people can refer online to go through the triage process. Then they’re offered either step two treatment, which is a Guided Self Help well-being option via online CBT and psycho-education.

Ellen explained that the therapy will usually last generally from six to eight weeks. She mentioned that as with a lot of NHS services, they are fully aware of the discrepancy in the quality of services for the BAME community, accessing IAPT services. Plus when they do access our services, we are also aware of the inequality of their experience and their outcome in poor experiences.

So SLaM have been working on their objectives, but they are resourcing and working hard to look at improving the access of IAPTs to the BAME community,

SLaM are working with our community partners. Which is the big drive for SLaM at the moment to work with community groups, especially with ones attending such forums e.g. community groups, wellbeing groups and fitness garden projects that already exist in the borough. SLaM are partnering up with such groups and seeing how they can work together to bring psychological therapy and mental health awareness treatment to the community in a way that is relevant for them.

Ellen reported that SLaM are also reaching out to step outside of the box and make themselves more accessible to provide such psychological treatments, but also to build more relevant services where to a greater racial understanding of how racism, and discrimination and inequality affects mental health. This helps in raising the awareness of triggers in such experiences. Racism is a trigger and discrimination can also be a trigger to mental health. It is important such forums like the BAME carer forum exist so these things can be talked about in safe spaces.

Ellen mentioned that it’s good to be at the carers forum to talk and network about how how we can continue to become a more accessible and more relevant service.

IAPTs will work with those from culturally sensitive support groups. So there’s lots of different projects IAPTs is involved in. They have become a sort of a broader service that is probably in excess of 100 staff on IAPTs alone.

Ellen felt it was time to open up to questions from the members and attendees from the Lewisham BAME carers forum.

Question and answer session at the forum

The first question was on working with grassroots practictioners on issues with racism, discrimination and some data triggers that effect on mental health.

They wondered how IAPTs is mainly dealing with practitioners and the community within that kind of setting and how does it actually work? Especially with the aim to raise awareness and to deal with the issues of the experience of racism in the community.

Ellen mentioned that there was someone who had been running these groups already. She runs the groups in culturally sensitive emotional support groups aimed at the black and African African Caribbean community, which were 12 weeks. Ellen quoted that the groups were safe spaces to talk about mental health and a convient way to develop emotional wellbeing.

Other questions were on staff and how many were from the BAME community. Ellen did not have the figures to hand, but is bound to bring them at a later date, although she did mentioned about 50% to be vague. Ellen actually leads on the counseling team and because they come through a different sort of training and different routes they tend to get a very diverse range of counselors.

The psychological well being of practitioner to practitioners are now become more increasingly diversity, Ellen might have to get back to exactly the figures, but SLaM are certainly visibly increasing numbers of young BAME psychologists coming into that work stream, where the mental health service have the biggest problem is in in high intensity CBT.

Although BAME therapists certainly are increasing, Ellen felt we’re not there yet. The service is still actively recruiting BAME therapists.

The impact of COVID and technology

Another question arised regarding COVID-19. The carer member queried about lockdowns going on for another six months, he felt carers will come to the organization in six months time, with the community suffering with depression, anxiety and stress. The carer was wondering how they’re going to cope with the extra load BAME carers who have suffered.

Ellen responded on why she is glad to be at the forum. She would like to speak with the group to be able to plan resources. She admitted it would be a difficult task. Within the Lewisham IAPTs she mentioned they have got two priority streams. One of the streams they call priority pathways where One of them is NHS and social care and the priority stream can be tailored to support BAME carers who have been hit hard by the COVID-19 impact.

The carer member responded back stating supporting BAME carers through the crisis is only part of the problem. He felt how can black people know what IAPTs is doing? Especially for COVID-19. So they feel they can come to you when they have a mental health issue and not waiting till they’re in a crisis.

Even the internet can be a problem in itself. If you haven’t got the internet, how do you get on onto a website? So I’m just looking about what IAPTs is doing?

Ellen did completely agree that they are also concerned about people who don’t have access to the Internet and digital services. The services are hoping to open up one of our sites, so that they can do face to face work for people who can’t access digital treatment. They even do telephone treatment which works quite. There is still a lot of work to do.

Other carer members were interest in the size of the Lewisham IAPTs team and how the core element works in diversity. The carer member was interested in how IAPTs is reaching the community. Other members gave some ideas regarding churches, supermarkets and leaflets. Some members mentioned there is a problem with GP referrals and there was criticism on social perscribing in where people just get endlessly referred and not supported.

One other question I felt was interesting was from another carer interested in if there is a body? Which has overarching responsibility for your services in terms of any mental health? This then led to another question from another carer regarding when IAPTs signposts people to the other services, social services and so on. Is there an effort made to check with how that signposting is working? How did they actually make a good connection? How long? How long does it take for that person to get an appointment.

Presentation from SLaM QI Peer Project Worker

Next up to speak to the BAME carer forum was Richard Merton whose role at South London & Maudsly NHS Foundation trust is to try and improve service user and carer voices into MH services. Richard started about how they had an event in July, where the aim was to talk about people’s experiences of meaningful contact during COVID and the sort of things that might help going forward.

From that event they took that away some themes and feedbacks. One of the themes or discussions that was touched upon in that event was of how the trust can support BAME carers. So Richard reminder us that there is another event on the 8th of October and it would be great if anybody wanted to come along to that. A lot of the things that was also discussed at the last event in July was around technology and access to technology, plus some of the things that the forum had been talking about.

Question and answer session regarding Quality Improvement

One carer member was interested in the speed of action from meetings as in how long when they have decided what the outcomes are of these meetings? The carer member continued stating how will Richard or the NHS Trust be able to really take to put decisions into practice? Because he does not want us to say, yeah, we’re going to do this and We’re going to do that. And then this time next year, we’re still working for the outcomes of these, because of the situation we are were under a moment.

The response from Richard was on how things are going to take some more of a structural change. However the event is kind of a listening event based on what communities asked initially. Richard suggested that he thinks it’s always important to come back to someone and annouce what could or could not be done based on what was requested.

Another carer member issued a request stating that if Richard be sure to send information about the October event through the involvement register. Plus to make sure to use ways and other means of sending the information out and spread it as widely as possible to the community.

Another member of the forum mentioned the situation with local government and the impact on BAME carers. She felt that people are not looking at financial aspect of that being at home and having to be connected digitally. Its like having to use the internet and there is no compensation because BAME carers are having to make sure they have to stay online, to be able to be in contact with all the things that are going on in the community, but the bills are going up.

The community support member continued to mention that she has lots of clients who are actually in financial problems. As in losing money in which they can’t have the internet, they can’t be able to be involved. So what aspects are they going to help people like that, she thinks this needs to be looked at the long term due to the high risk of people losing their jobs.

Richard mentioned that NHS England, have got a branch called NHS-X, which looks at technology. And so that’s slightly will take a bit longer, but they’re looking at questions like the community support member raised. Richard also raised the point that at the trust they had a response to COVID. They have a few what they call workstreams going on and one of them is remote consultations and how we can do that across the trust.

Another carer repeated the question saying this problem with technology and paying for broadband and so on, has been going on even before COVID-19. She had to support someone and still supporting that person after she had spiralled down into severe depression. It seems that one of the causes was the person she is supporting was in serious debt, partly because of phone bill.

One of the newer carer members pointed out that the financial issues have always been an issue. And it’s a mental issue. And it’s just the way it is, and it’s never gonna change any time soon. But the question really is how you change that. And when you use the word inclusion, or what we use when we talk about community, there was a way of taking that deficit and turning it into a positive. This is what is needed to be involved in a community. So if there’s a way of paying it back then it is a sort of benefit. Because then you’re giving help to that person who then learns as if it’s an education. I have no idea why this is not happening, but all businesses should have a social responsibility

Richard mentioned how there was support from Charity especially regarding the purchase of mobile phones to help mental health staff connect more with their patients. Richard admitted charity cannot be the complete answer. Richard also wanted to say that a few of people at the forum came to an event in June, which was a big broadcast, where SLaM plan on developing work streams linking the leaders of the council’s together, and and looking at some of these social issues.

Some of the members of the forum are also members of the Lewisham BME Network, one member of the group mentioned an initative from Microsoft that is currently investing in BAME communities. She felt that it is really significant if Microsoft is connecting with some of the groups, and maybe other providers are doing the same like Virgin, or one of those. She felt that perhaps we could ask them on what they do for charities. So there’s probably things we could do in the community that would impact the way we take on the digital platform.

Other carer member raised an important point on that there are many strands to what needs to be done within the community. But if we’re talking about the individuals, within the community, black and white who are experiencing poverty and no access to the internet and phones. He thinks there’s more of a structural in political resolution to this and not just community based solutions. So maybe talking to MPs and putting pressure on them in that sphere, to look at the whole wide community as a whole, not just particularized issues that we’re raising today.

This concludes the brief update of the September Lewisham BAME carer forum.

Top 10 reasons for carers to give views on healthcare

me_edited-1Welcome to another blog post by Matthew Mckenzie, a former carer and carer activist from South London. I usually focus on carers who care for someone with a mental illness, but at times I delve into health and mental health.

Never before has the healthcare system in the UK been under a spotlight due to the COVID-19 pandemic.

There are many organisations that request unpaid carers to share their opinions on healthcare. One of them being healthwatch.

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You as a carer can experience what healthcare is like, when the person you care for receives that care from health or mental health services. If the patient’s care is poor from those services, then unpaid carers are forced to step in. If health services do well, then the burden on carers is lifted.

To watch a video blog of this post, click the video below.

It is so important carers of those using the health care system come together and submit their views on healthcare.

Top 10 reasons to put your views on healthcare as a carer

1. To provide feedback to improve health services.

– At Healthwatch engagement meetings, Healthwatch usually ask questions to participants on how do they think health services are doing? It is the best time for carers to report or feedback how services are affecting the person they care for. These views can go back to improving health and social carer services.

2. A fulfillment of changing something

– Although carers can get fed up of stating the obvious when health services continue to struggle. It can be a fulfilling experience to use the power of your voice to institute change.

Not many people have time for unpaid carers along with the ‘cared for’ to try and change things for the better. As a carer its a chance to change things, which is better than no chance at all.

3. A great way to network with like minded people

– At times, there might be other carers attending Healthwatch events or groups interested in how health and social care is affecting carers and their ‘loved ones’. The more you attend health engagement events, the more you can network with like minded people. It is in carer’s interests to network and understand the pressures on health systems.

4. Getting information on health services

– It is not always feeding back your opinion on health and social care. At Healthwatch events, there are often reports and updates to the community. As a carer you can get the chance to find out how services are doing.

You can even ask questions requesting reports and updates for particular services, it is your right to know and you should exercise that right.

5. Being part of the ‘health’ community

Without good health or good healthcare services then the community suffers. There are local and national drives to improve health for everyone and get people to understand the importance of health services. A community that is interested on how health services is performing is able to inspire others. It takes time, but it is worth it.

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6. Making a change for the better

People can either wait around for health services to change or continue to complain. Carer’s can try to see the overall picture of what things could be like if they feedback on healthcare experiences.

Carers cannot always expect the person they are caring for to do this all the time, so carers must want to change things for the better. A better healthcare system supports everyone, health professional, patients and their carers.

7. The reward is greater than the risk

The risk of healthcare failing or not getting responses can be catastrophic for everyone. The more feedback a healthcare system gets, the more information that can be tailored to improve health services. If people do nothing then their is always that risk. The risk can cause health systems to not perform, causing more patients to be unwell and not get a good experience of care.

8. Know who is responsible for what

When attending Healthwatch meetings and engagement events, notice who also turns up. There might be health commissioners who are responsible for purchasing health services. There also might be those who run those health services. Just knowing who those people are can be a way of holding them to account on services. It is possible at these events to even ask them questions or queries.

Healthwatch

9. Meeting the challenges

The health and social care system is under increasing pressure. If it was not for increasing budget problems to services, then the COVID-19 crisis has increased the strain on services. All these are challenges for the 21st century and carers should try and rise to meet those challenges.

10. Helping other carers in your field

Information, reports and surveys from Healthwatch should not just stop at the carer attending such events. Carers can take the lead and spread information to other carers, especially at carer support groups or carer forums. Not every carer can be everywhere at once, so veteran unpaid carer can help others become more aware on how services are doing.

Lewisham MH Carers forum July 2020

Lewisham Ward MapWelcome to the July edition of the Lewisham Mental Health carers forum. This is one of the carer forums I run in order to help families and carers understand, engage and query mental health services. This can help services become more carer aware and aides in a working relationship with carer’s.

For the Lewisham MH carers forum we were joined by regular carer members, plus Damian Larkin a nurse working on clinical systems. The forum was also joined by Karen Machin a carer peer network campaigner and researcher, plus the communications rep from mental health organisation SANE, Public Health in Lewisham, Maudsley’s complaints department manager Edith Adijobi.

Also in attendance was Beth Brown who is SLaM’s Patient Experience and Quality Manager. We were also joined mental health lead of the Lewishmam & Greenwich hospital trust and lastly the involvement lead for Lewisham & Croydon from maudsley NHS trust.

The Lewisham carers forum runs every last Tuesday of the month and is usually run from Carers Lewisham, but due to the covid-19 outbreak the forum has been running online.

Public Health Lewisham research

First to speak and update carers in Lewisham was Lisa Fannon from Public health in Lewisham. Lisa gave us a brief update on the work that she talked about at another forum I run. Lewisham council is undertaking in a research partnership with Birmingham City Council where they are going to look into health inequalities faced by black, African and Caribbean communities within the borough. Public health Lewisham are part of this process and will be looking at the evidence which have been some of the key issues affecting the community.

Their intention is that they will provide some solution focused approaches which will enable us to tackle such health inequality issues wherever possible. Lisa also wanted to let us know that they are this week opening applications to people within the community to support an advisory board. Lisa mentioned it’s a unique volunteering opportunity to be part of a groundbreaking piece of research that will inform the work that Public health are doing within the local community.

Carer Peer Support

Next to present was on carer peer support networks. Karen who is a peer network speaker spoke about her personal experience of being a carer. She also spoke about the challenges she found on the mental health system and felt being able to sort of stand back and reflect on things.

She did value the networks that she had made when experiencing mental health systems be it locally, regionally and nationally, she had some networks where she could share them with people and hear about what other people have been up to. Karen found those networks really helpful.

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The last 10 years or so, her interest has been around recovery and peer support in a way of focusing on healing and discovery. She mentioned that she doesn’t really like the word ‘recovery’ when compared to carers. Even though it is a word that everybody uses, but she is still interested in recovery because it’s always about the people that we support.

She felt that the focus on recovery is always about the person who’s using mental health services. It’s not necessarily about carers. So she did a write up some years ago about it, but she still think it’s a topic that signals whenever there’s recovery then it might not be for carers and everything could be patient focused.

Karen wants carers to query things by asking about the nature of carer support.  Questions like ‘What is it?’ What does that look like for carers? And how do we get current skills involved in that? Her main interest is around peer support, and that’s about people supporting each other.

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She feels that even with all these new initiatives around peer support, that carers sometimes still get ignored.  Around 20 years ago, we were asking for what would now be called a carer peer support worker. Unfortunately she does not see many carer support workers, although there’s lots of initiatives and resources and money going into developing peer support workers which are roles within mental health trusts and voluntary sector organisations.

This is not the same issue around carers. She always wanted to hear from somebody who’d been in a similar position when she was caring, who could kind of use their own lived experience to the listen and support carers. Perhaps somebody who was actually paid in such a role and also was valued and supported themselves.

It’s not just about peer support, it isn’t just about volunteers. It’s also about the resources going into paid roles. We in a situation today that we are trying to avoid the new pandemic. She feels that it has created a really abrupt change. It’s been a very serious and traumatic time for many of us carers. That means everybody even those not accessing mental health services. For the whole population it has been very difficult time. The pandemic certainly has highlighted places where there’s been poor services or poor access to services. Karen felt some criticism at the NHS, but she is usually very supportive of it, which has really highlighted some of the challenges in service provision within mental health.

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Karen also wondered about bereavement services and support for carers among such services. She felt that people have looked for access and support, but Karen mentioned that people have also had to look to communities for support.

She does not think they’ve looked particularly to the NHS and because it has been so overwhelmed with other issues. So people have had to look for that mutual aid into communities.

She included in her talk the use of remote access on how communities now can be national and international, and that is certainly a community that she wants to be  involved with. She recently managed to speak to participants from around the world and heard from a lot of peer support groups where they’ve been questioned whether people can join them. There have been lots of people from the States and from Australia so networks and communities are getting bigger because of the opportunities of remote and virtual platforms coming from avoiding COVID-19.

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Karen stated to the carers forum that perhaps maybe this is an opportunity to do things differently. She knows that commissioners and providers are all asking us those questions of how we’re going to provide things going forward. When she talked to them she keep repeating herself and saying we have to listen to people with lived experience and their carers. Karen felt that’s something that’s been high on the agenda for the last 10 to 20 years anyway and felt providers and commissioners know that they have to listen to communities, they know there’s a gap between what they commission and what people experience.

Lastly Karen spoke about how our communities can help us to get heard and questioned how do we build those communities? She felt it needs to go beyond local. She mentioned that those at the forum are in a great position in London because we have got opportunities that go beyond just our own Mental Health NHS trust into other mental health trusts. We have a chance to hear about how others are providing services and the different teams that are available.

She does wonder how we can expand this nationally because there aren’t any national networks of carers in the UK. She would like to hope in the future a way to develop national carer peer networks and once COVID-19 is over, then we can start to develop those networks ourselves.

Questions from the carer members

The carer members from the forum were inspired to ask questions to Karen. One member asked what was she doing for older carers in the role she is in at the moment, especially with ethnic minority cares? The forum member wanted to know who at the moment could explain the situation of suffering in silence because of stigma?

Karen mentioned that she has not got the expertise around older carers in her local area, But she has heard of lots of other organizations, not here, but around the country, where carers and communities are coming together to provide that support themselves. She understands about those worries about what happens if a loved one goes into a care home? And what’s that going to mean for us? And so people, it’s about, it’s what she has been hearing, it’s about communities doing that work. And that really worries her in many ways, partly because the sustainability of that, how do those local just groups of neighbors basically, and how do they sustain that effort? And how do we scale that up? How do you make sure that that continues?

Another question raised was from a carer who had read in The Guardian newspaper that Boris Johnson is considering amalgamating social care into the NHS. She felt in principle, I think it’s a good idea. But what what concerns her is that does that mean that’s another group getting that is going to push mental health out of the way? Because Health services has made mental health services a Cinderella service and now social care will make it even more irrelevant.

Karen responded that we got to keep an eye on such things and she felt it’s through networks and making sure that we’re all connected within that we can keep an eye on. Karen did agree with the carer and felt perhaps the change could potentially be fine. It could have potential. Still she thinks many will be worried about that gap between health care and social care.

SANE new campaign and project

Next we heard from Emma who is the media and communications officer at the mental health charities SANE. They are a national mental health charity. Emma felt it was a real privilege to hear from carers and to learn from us as well. She thanked us for having her in this space.

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Emma introduced herself as the media and communications officer for SANE and they are working on some exciting projects although she could not go into detail at this moment in time because it’s still in the planning stage. The campaign will be launched around autumn time and they are looking to collaborate and work with caregivers, mental health caregivers who care for someone with serious depression.

Emma continued that supporting mental health care givers is also a core campaigning area for the charity and she knows it’s something which SANE’s CEO Margie Wallace is really passionate about. So if there’s anything that SANE can do to support us or if we know if anyone’s interested in reaching out and working with SANE then please do get in contact.

Patient Experience and Quality Manager presentation

Next to speak at the forum was Beth Brown who is SLaM’s Patient Experience and Quality Manager thanked me for inviting her. She was here to talk a little bit about what she does as patient experience and Quality Manager. She then talked a little bit about one of her work streams, which is the patient and carer feedback surveys. She mentioned her role has kind of two main aspects to it. The first one is around patient experience, so she manages the trust wide patient care experience survey program, which some of the group might have heard of which is called PEDIC. Beth also look after the Trust’s participation in any national surveys which are run by the Care Quality Commission. So that’s the means that they participate regularly each year is the National Community Mental Health Survey.

It is her role to look at the themes that come out from all of these places and, and try and kind of track trust wide themes. And that can help inform our services, and to kind of look at their local improvement because the whole point of it is that we can improve services.

Beth moved on to talk about how she manages clinical audits and the effectiveness team. They look after a program called perfect Ward, which is a way of tracking clinical audits throughout the trust, which includes things around clinical safety, medicines, infection prevention control. They also have an audit around patient experience and staff experience. Plus they also have someone in the team look after NICE guidelines, so you can have best practice for trusts and national clinical audits which are run by the Royal College of psychiatrists.

Collecting data

At this moment Beth’s team are just preparing for a upcoming National Audit on early intervention in psychosis. Beth started showing the forum presentations from her slides. Where she showed how centrally important that audit team works with the patient and public involvement leads and on complaints.

Beth tends to have a large spread of different people to work with, she went on to why a patient care experience feedback is important, because so they can see what we’re doing well and what we need to do better so that we can improve the services and deliver the as possible care. Plus they need to collect feedback in a lot of ways.

They have kind of lots of more systematic and structured ways of collecting feedback, where Beth showed the data the team  collect it from a trust wide level right down to individual team level. From on the Ward and the NHS friends and family tests, through to kind of trust, consultations and engagement. The team also work through complaints, PALs, service formal and informal effective compliments, a kind of like individual project based feedback.

As Beth showed us her graph and she explained top left graph which is around on the friends and family test score in Lewisham. There was also the national indicator for patient experience. The aim of the graph is what extends as and so what this chart is it tracking the number of positive responses to that to the people that say they’re extremely likely or likely to recommend the service they’ve received.

And there’s tracking over time from April 2017. And you can see from around January 18, to may 2020, if you put a line through it, it’s a very gentle increase in performance. And that reflects trust wide performance. However there has been a significant change, due to this massive dip in June 2020. That is the impact of COVID-19 on our data collection. They had two of our data collection methods suspended due to infection infection control. And now got two out of three open and but we had a massive drop in response rate. So it’s the two that means that the fewer responses you have, the more the data is influenced by extreme responses.

So the forum was shown data for Lewisham over the past year and the members were told that the team had overwhelmingly positive responses, and those numbers of 1169 and 21015, their response rate, so that’s the proportion of positive in comparison. Beth reminded the forum that I was interested in hearing about the FFT school, by ethnicity and by ethnic group. So at the end of our PEDIC surveys, they asked a number of demographic questions and the purpose being that they could see whether any particular groups are reporting different experiences. And that can help inform different work streams.

So for example, there’s just been a piece of work that we found in Lambeth where LGBT patients were reporting poorer experiences. there’s also a trust wide quality reports, which you can get on SLaM site website, which talks about FFT scores.

A piece of work that Beth is doing at the moment, is to allow her to look at positive and negative test results by ethnic group over around 25,000 participants so that they can make more data and say something more about the database quickly to see what it is telling them.

Questions from the carers forum

One carer who is often interested on where mental health services get delivered queried the actual number of people accessing treatment. If it’s a positive outcome, obviously, it’s very good. But that doesn’t necessarily mean that mental health services are delivering good services. The carer felt that SLaM are missing delivering service to the people who struggle to access services via their GP. because sometimes there’s subjectivity as to who goes through and who doesn’t. And as we all know, there’s also financial constraints. And also people who, who don’t feel comfortable with a GPS, therefore can’t get a referral, even with their carer is trying to get their relative to access services.

Another carer agreed and felt it was one of the most stressful things that they found as a carer and that they belonged to several carers groups noticed several people have said this, that it’s it’s especially with children anyway, as well. It’s not so much having the child or the person with the mental illness.

Beth responded on member’s experience of their loved one’s difficulty accessing services and the impact that has been. She continued to mention that they are hearing about that in our patient surveys.

So even the people that are accessing our services are talking about the difficulty that they’ve had to get it and the impact that’s had on them. That is kind of growing in prominence as the you might have seen over the past couple of years. It is an issue and it’s it’s an issue that the trust is aware of, and there are lots of workstreams and programs going on across the trust to tackle access to services, not least Since COVID, so since since before that as well.

BETH application presentation for service user and carer input

Next speaker at the Mental Health carers forum was Damien who spoke about the revamped online patient system called BETH. BETH is an online app and what it does is connect patients or service users peers and staff, they can communicate, they can collaborate. And it’s not an app because it works through a web browser.

Still BETH does it look and behave like an app what’s known as a web app. To access BETH the address is beth.slam.nhs.uk . Since this is a new digital online platform it connects us and it supports the service user’s the treatment that SLaM provide. Damien mentioned that because of COVID-19 that we all have to try just try and communicate in different ways not because it just hasn’t been possible to do what we have done previously, its just BETH really supports this.

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BETH takes its name from bethlem and which is the Bethlam hospital that SLaM have in new Beckenham and also the museum of the mind. SLaM’s vision is that BETH will support the care treatment that people receive. Damien then showed the forum some presentation slides of BETH in action. Damien showed the carers how it looks like on a mobile phone. BEETH can be used on a mobile phone, it can use on a tablet and it can used on any kind of device like a laptop, or a desktop.

Damien also showed how service users or patients signup to BETH and how they can securely message the care team, they can also get access to their care plan or consider upcoming appointments. Patients can keep track of mood and sleep and they can use the free online resources that SLaM have included in the BETH online system.

BETH-2

Service users can choose to use certain functions and also carers can choose other BETH functions. There’s more in there for patients at the moment although SLaM want to do obviously develop on this. Damien then showed us how to register for the BETH system in instructing on where to sign in if your patient of services by you putting your first and last name as it appears on SLaMs records.

You would then just put in your email address and you create a password and that becomes your login details for everything. But then in the middle you see that red box there’s two tick boxes, one to indicate if you’re patient one to indicate if your carer, family or friend.

if you’re a patient, the two other boxes appear saying asking for date of birth and NHS number and then they accept the terms and conditions all of that and you get access. If you click on the second box there to be a carer or friend. Once you hit on create account, it’ll ask you if you want to connect the care team of the person that you care for. And you just need to put in the person’s name full name as It appears.

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Complaints department Presentation

Next we had Edith Adijobi who is SLaM’s complaints manager to engage with carer members at the forum. When you think of complaint’s carers tend to grit their teeth, but I noticed the members were happy to get engagement from complaints because people feel complaints tend to hide away and defend services. Edith opened up her talk by stating that she genuinely love complaints. I noticed one or two carer’s laugh about this, but then they warmed to Edith.

Edith mentioned that she has been working in the field of complaints, panels, patient experience and bereavement services in the NHS for about 21 years. She is very passionate about complaints. So in the trust people sort of have to stop her talking. Edith mentioned that she is also known in the trust for a lot of pushback, because one of the things that frustrates her deeply is if she ever hears somebody say there’s nothing they can do, then Edith feels that carers have to complain.

Edith feels that people shouldn’t ever have to complain to feel heard, she feels people shouldn’t ever have to complain to feel that services are going to do something about something they flag to SLaM. That doesn’t mean services stop people complaining. But if we’re telling people that the only way we’ll hear their voice is if they complain then something’s gone very wrong, and that really frustrates Edith.

Edith does staff training on complaints, So one of the things when she does on training their staff is she is officially their worst nightmare at times. She mentions that officially she acts as a worst nightmare as a patient. Edith then took us through some brief data. She talked a little bit about why we take complaints as a trust and the approach that she finds

She feels it’s about really encouraging and supporting ourselves to think about doing the right thing at the right time, really reflecting on on the information we get. And how do we learn from mistakes, because she thinks the moment you say the C word, as she says complaints, people get their backs up, people get quite anxious. How about we split it into a concern and a complaint? what is actually happening there? What are people trying to tell us? And these are some of the ways in which we get information.

Edith talked to carers about the different organisations that are interested in the types of complaints the NHS Trust gets.  So they get reports from the Care Quality Commission, quite a lot of our patients will go direct to the CQC and to then pass them to us. We also get views from Health watches, SLaM’s CCG commissioners, we even get people tell us first What do we do and how do we did Last year.

complaints presentation -1

Edith spoke more about the charts on the presentation and showed how these are the complaints they got as a trust. Although in one month the figure obviously dropped really sharply because of COVID. Edith showed us a closer look at Lewisham complaint figures and noted if we could see my mouse just scrolling under the Lewisham accounted for 88 out of 558 complaints pulled up through the Directorate.

She then looked at complaint, which was commissioned by Lewisham. So that will go across SLaM’s oldest adults and their CAMHs service, but this was just to give us a trust wide look. Looking across the trust, if you have a look at the Reds or the complaints and the blues are compliments.

Edith moved on to mention that they have tried a new system since last October. They are encouraging people to record directly so that we can actually capture information. So just that was an April to make a March this year. This is this quarter, and you’ll see that a bit had a real impact on just SLaM’s organizational numbers they receive.

Edith mentioned that sometimes it’s just somebody picking up the phone and not being able to get hold of a doctor, not being able to get hold of a nurse, or, in some cases, people wanting access to a service. But the commissioners haven’t actually commissioned us to provide that service. So how do we as an organization feedback to the CCGs or how do we actually tell somebody that what they want is what we Provide that’s not being provided by a third sector partner, or the CCG has different arrangements.

Edith concluded that sometimes we’ve got those type of issues going on and sometimes someone is to blame. Sometimes when something is wrong, it is because of there is a reason. So one of the things maybe we want to look into is culture of the trust. Is it that we’re blaming that member of staff, and that member staff is the one who’s accountable because an appointment failed to be booked? Is that staff member under too much pressure or not supported? What is the cause?

complaints presentation -2

Carers from the forum were surprised, but happy to have a presentation from the complaints manager since the forum has existed for many years and the subject of complaints is often raised.

Telling your Carer’s story

Fotolia_73087289_XSHello, everyone, welcome back to another carer blog from former mental health care Matthew Mckenzie.

This time I am writing my book about my caring experiences. The book is soon due for release. I say probably about two weeks time or perhaps the end of next month. I certainly will release it really soon. I have titled my book “A caring mind” but I don’t want to talk too much about the book. The book involves a lot of things and I’ll be doing In more blogs about the book, due to my experiences of being a carer over the years.

This particular blog is about telling your story as a carer.

To watch the video about telling your story as a carer, see below.

One of the chapters in my book is about “my story”, which is chapter two. I also explain the reasons why I took on the caring role for my mother, plus also helping my brothers. I also explain what the things I experienced and I explain a bit about my carer story journey and how it changed over time.

A few things I want to point out is that when you tell your story it shines a spotlight or at least highlights specific issues. If you tell your story as a carer, it’s a way of forming connections to those who are listening to your story, this being other carers.

I find it’s a way of release, when you’re telling your story, especially if your carer’s journey was very difficult. When you just want to tell others “This is what I’ve experienced” or “This is what I’ve gone through” then you’re sharing it with other people.  It might not even be a difficult journey, but it is a way of releasing that out there.

Giving help

There are other main reasons and why it’s important to tell your story as a carer. I think probably the most biggest reason would be that you’re actually educating others. Now, I’ve mentioned before that you would be more likely be telling your story to other carers. In the past when I’ve told my story, and it could be at events or conferences, I found it was a way to educate not only the audience, but within the audience, you could have other carers and pacifically health professionals, those who provided health and support for your loved one or the person you’re caring for. So you’re educating the professionals via health or social care.

Now I’ve looked around as to why it is really important to tell your story as a carer and I’ve come across a report or document released in 2015. It’s came from NHS England website.

And basically the title of this document is “Using stories to improve patient carer, and staff experiences and outcomes” It mentions stories of staff, patient and caring experiences, and journeys through their health system enables NHS to redesign and improve care, according to the patient’s needs are the carer’s needs, where every step of the patient journey is examined and improved.

Reasons to tell your carer’s story

The whole aim of telling your story in some sense would be to improve how the health system works how local authorities provide carer’s support to carers.

When health and social care organisations do events, they want to look into what happened due to a serious incident or a death. They want to improve the approaches or systems regarding complaints or what worked well and what didn’t. They would look at perhaps this is a very good example would be a promotion of service perhaps in a ward or in a GP practice or surgery.

They will display information leaflets on what is happening in a particular service and a good way to promote the service is to have a carer or patient tell their story at that event. But there are many other reasons in using a story to improve the outcomes and redesign or improving health care, health and social care systems.

How you can form your own carer story?

You have to start somewhere. And the aim is to get that story out. Now, what I was told in the past when I was caring for my mom is to perhaps do a journal perhaps everyday if you can, or maybe once a week and how things have been developing because you can look back and look into that journal say, Okay, I tried this, it didn’t work out. It was kind of trying my out caring role and checking what is working.

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When you do a journal, it wasn’t really about to form a story. It was about to keep an eye on if anything goes wrong and you can provide evidence and it can help in writing a doctor’s letter, if there’s a particular issue or symptom that the person you were caring for is suffering, but it can also be used to form your own carers story.

Where can you tell your carer’s story

I want to talk about really where you would want to tell your care story. Now I found the easiest way that I, in the past have told Mark hear his story was probably at NHS carer support groups, because what would happen to your support group is that they would speak to each carer at that group and say you say to them, how things going along for yourself. So I think that’d be an easy way of building up the confidence to tell your story. Another way if you have a fair bit technical knowledge, is there’s no reason why you can’t develop an online video on YouTube.

A good way to tell your story is at events. As in conferences, promotions, especially at mental health trust events. When I was caring for someone using mental health services. My local mental health trust put on carer conferences or carer events, or even mental health events, and they would invite a carer, to tell their story, or even at board meetings, or NHS training courses.

They would invite carers to tell their story and as a way of co-production and getting involved. Another way would be to blog, your story. If you have a website or blog site, there’s no reason why you can’t blog about your carer story. Lastly you could immortalize your story in a book, but be aware that it’s important to have some aspect into confidentiality when you tell your story if the person is still alive or if there’s others involved in that story. Please try and think about confidentiality unless you agree with them that you have to mention them in your book or in your story.

Conclusion

In conclusion, you know, I’ve noticed Carer’s Trust and other major carer’s charity in the UK encourage carers to tell their story. I don’t think even matters even if you’re a carer or former carer, it’s always good to try and tell your story. never tire of telling your story again because it does educate others, and it’s a way of telling others about your identity, your carers identity, and has been a main part of your life.

Lewisham BAME MH Carer Forum July 2020

enteranceWelcome to the July update of the Lewisham BAME mental health carer forum. I’ve been doing this forum for many years now. As a reminder I run carer forums aimed at carers who are looking after those with mental health needs challenges or mental illness.

These forums are just a way for carers and families to get educated in regards to mental health services, or local author services. This forum is specifically aimed at those from the BAME community, the other carer forum I do is just more general mental health carers.

The BAM community have two specific set of issues Hence, the patients may end up using community servies, you know, high secure mental services. So that was the aim to sort of get them to have have an idea about the services created them, see what’s working see what isn’t working. For the July Lewisham BAME ME carer forum we have the Care Quality Comission (CQC) attending, plus regular carer members, along with Oxleas’s Community Development Service Manager and BAME Staff Network Chair. We also had in attendance SLaM’s peer support project lead and Damien Larkin who is a nurse who works at South London & Maudsley developing BETH the online patient health recording system.

The forum was also joined by Bromley, Lewisham and Greenwich mind Peer Project lead who offers support coaching up to £250 funding or people to set up peer support groups in their community. This is to help peers around mental health and well being, especially during this period of lockdown, but also beyond supporting people within the community around their well being and mental health.

Lastly the forum was also joined by Abby who works for lesbian refugee migrant network. They are one of the partners in the community well being service she is also the Community Engagement Manager delivering culturally mental health services.

Although the forum covers mainly Lewisham, we welcomed a member interested in BAME mental health groups and she is a Mental Health well being practitioner who also provides low level mental health support for children/young people under the ages of 25, vulnerable people going back into employment and business startups wanting mental health support.

CQC Presentation

To kick off the forum the CQC spoke about their role and answered questions. I invited the CQC down because I wanted carers and patients to develop more of a relationship with the CQC rather than the CQC engaging with users of services when inspections of services arises.

Quality-Care-Commission

Natalie Austin Parsons who works at the CQC meaning Care Quality Commission as an inspection manager spoke first as 2 CQC staff were present. Natalie was handed the role of engaging the forum because the previous CQC staff member Emma Mcfarlene only works in the directorate of adult social care, so they would inspect residential services for MH/LD/autism as well as nursing and residential homes and domiciliary care agencies. Emma suggested Natalie engage with us since Natalie works in the hospitals directorate who inspect in-patient and outpatient mental health services

Natalie was also joined by Susan Shamash who I have known for many year, were Susan attended my Lambeth Mental Health carers forum when they last inspected South London & Maudsley.

Natalie was kind enough to answer the previous queries I sent her before presenting to the forum.

The first question was on how does how does the CDC engage with slam? And how does it inspect and slam so

Basically they have a named inspector within the London mental health team. Plus they have a named inspection manager within the same team, that being herself. So we meet with senior staff within the trust regularly throughout the year, every two to three months. Face to face it was before COVID they generally would have those meetings at about 2 and or 1 and a half hours. The CQC would talk about previous action plans. So when the CQC came last time, they asked SLaM to improve this.

The CQC also get any kind of information or intelligence from absolutely anyone in the public who contacted them and if the CQC are concerned they will contact them immediately over email or phone.

The CQC use such information to see what’s going well, what are SLaM celebrating at the moment? What are SLaM working on that they they feel really proud of. And that’s really important to remember that there’s lots of things that could be improved in every trust, but there are also things that they’re doing a great and that’s how often the CQC tend to meet them face to face.

The CQC usually have contact with SLaM’s the director of nursing and director of quality. It’s only half an hour meeting every those every two weeks, but there’s a lot of turning in for information.

The CQC also have focus groups throughout the year if there particular errors or teams that the CQC haven’t heard from them for a while, or they want to hear what their improvements are while they’re doing well. The CQC will invite them to attend, but it can be really tricky, as Mental Health staff are really busy and realistically, who wants to go to a CQC focus group sometimes that’s not everyone’s first choice activity.

There will be some changes in how the CQC inspects SLaM due to a change in methodology. The CQC used to do a lot of engagement just prior to an inspection period, but now we’re looking at trying to spread that across the year rather than all in one concentrated amount.

The CQC respond to the first set of questions from Carer members 

The CQC gave the forum space to question them about their first response to my query. A carer member noticed a criteria that caused problems due to getting access to mental health services. The carer felt it meant that less people are getting services. Therefore, you could argue you’re going to get a better output because you’re dealing with a small amount of people getting access via MH service from their GP, which could lead to a false economy of patients quality of service within the mental health trust.

The CQC acknowledged the concern and stated it was a really important point. The CQC are always open and welcoming to any ideas. on how do you think that the CQC could do to help services improve.

The carer suggested sampling on how many people that got rejected for mental health services against those that was accepted. So to see within those within that range who they are, and then do a comparison, and see if there’s any within those samples of rejection and actually had similar cases.

The CQC noted that it was outside of what they would do for an inspection, however they are to happy to feed that back into their colleagues that go into GPS because the ones at this forum inspect mental health trusts only. This was a very important development as the forum is examining how GPs engage with mental health carers, especially if GPs are the first port of call for patients or carers during a mental health crisis.

Another question from a carer was about when the CQC come to South London & Maudsley how do they look for equality and diversity regarding carers? Because the carer has never seen you when the CQC show that in their report. The carer wanted to know if there is anything regarding carers, The carer also asked about queried that there’s never anything regarding carers or support on it. So how do you they show the quality regarding carers. This question was interesting since a mental health carer policy the Triangle of Care wanted the CQC to acredit such inspections regarding services to carers.

Again the CQC admitted that it doesn’t often come through in the reports very much even in the narrative. This is not only in slam but all the other mental health trusts, which the CQC will go away and report that to their team. The carer was also concerned about measurements of stigma and concluded that when it comes to mental health people have got stigma, especially the BAME community. If the BAME community can’t see anything from the CQCs report then they feel that you’re not interested. How can you be supporting us? If you’re not showing what you’re doing for us?

The third question from another carer member was a suggestion mentioning with regards to doing some measurements. Could the CQC not start with an existing data? Are they looking at historic data or working from the bottom as a starting point?

The CQC responded that this is something that they would do. The way they probably go about this is to have the mental health trust to do this. The CQC would ask the trust if they have the data? And if they don’t have the data, why do they not have the data? How do they analyze the data? And what are they doing with it? Have they made actions realizing that they could or couldn’t be doing something better? So certainly there’s work that the trust will have data that they can use to analyze this, but there may well be other areas that they could collect it.

The CQC present on my second query

The CQC responded to the forums questions and moved on the my second query I raised with them before they engaged with my BAME carer forum. The second query was on “How does the CQC engage with patients and carers during an inspection of a trust?”

The CQC presented that as standard when they come and visit a trust as large as slam, they divide services that it provides into something that the CQC would call core services. So examples would be adult inpatient wards. And slam have a number of those adult community mental health services, children, community mental health services, and substance misuse services if a trust provided. So those are examples would be wide across borders, and across all trust, and then the CQC write a final report for the core services.

There can be some difficulty if you are wanting to find out about a specific Ward or a specific team, and it can get quite lost in a report sometimes. if the CQC finds one Ward, or team that is doing particularly well or bad, then they will write about that in the report. But generally, across the trust this team, this type of service is doing well in this area or it could be improved in this area and then if the CQC need an improvement, they put it across the whole Trust.

Later on they inspect the trust about that improvement and in the report, the CQC have the five questions. So is it safe? Is it effective? Is it caring? Is it responsive and is it well led.

Experts by Experience

When the CQC come in with a team of inspectors, they are joined by professional advisors, who are currently working in that in that type of service in another range of interest. The CQC come in with experts by experience who have used that type of service themselves. The CQC do have people who are carers and who come in as the expert by experience as someone who is cared for a loved one with a mental health difficulty. Unfortunately the CQC don’t have many carers, the CQC have more people who have personal experience and the CQC would always welcome many more carriers to join that process as an expert by experience.

When the CQC come in they interview staff, they look at case records, they look at the environment, they interview service users. And the CQC do try to interview carers.

The CQC admitted that they think this is where they could do a lot better. The CQC request the contact details and the consent to be contacted by them through the trust, which the CQC think can be one of the barriers, they can’t just request a list of everyone’s names connected to services and then call them out of the blue. And so so that makes it a bit a bit trickier. Obviously, not everyone wants to speak to the CQC as well. Not everyone knows who the CQC are what they do. And that that again can be a barrier. The CQC collect all of that evidence and they make a judgement about specific things, you know, medicines appropriate training. So, that’s kind of an overview of how they do an inspection.

Inspection during COVID

Because of the COVID situation, the CQC are adapting the way they work at the moment. So they actually will give them longer time to spend talking to carers and people using services by telephone or maybe conferencing software.

The CQC then paused the presentation to give carer members a chance to raise questions on that subject. I won’t go into too much details about the questions, but they were very good regarding

1. How the CQC can gather patients and carers to hear abour services.
2. The problem of BAME carers worried about COVID-19 and how this will be captured in reports
3. More questions regarding sampling and data.

The CQC then presented on how well SLaM had performed during the last inspection and also responded on how well Oxleas has performed since Oxleas usually attend this BAME forum at times.

SLaM Peer Support lead presents

Next up we have the Peer support lead for the trust present on her role. Her focus at the moment is around making sure that we get more peer workers, working people, workers or people who have lived experience of mental health. And they are trying to make sure that we get peer workers working in all different departments of SLaM. This is so they can offer the lived experience and support people in navigating through the mental health service and navigating their way through recovery.

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SLaM have is what she mentions is a values based measurement, which means that they train peer workers to work to a set of values. Those values are the value of lived experience, developing safe and trusting relationships and strength based approach, anti racist, anti oppressive practice.

Training Peer workers

The peer lead continued that they train people and they do an eight week accredited training. They want to train people who have lived experience of mental health and who have used services. It’s really important to say that just because someone’s got lived experience, that doesn’t mean that they’re going to be good peer workers, you need experience to be a peer worker, and for having lived experience doesn’t make you a worker looking for loads of skills and qualities as well including communication, kindness, and the team working at able to support people with certain kind of recovery.

So what SLaM are looking at is a quite a wide skill set, so SLaM train people for eight weeks and then after that, they are working with teams to see where SLaM can have vacancies. At the moment, a lot of her work is trying to to transform their vacancies into pure workarounds. So maybe they’ve got a vacancy for a support worker, and see if we can transfer them to that team.

Carer members raise queries

There was a large number of questions from carer members one was on what support was given to Peer workers in such a demanding role. This being clinical supervision or regular support, support from line managers, etc, because there may be the sharing of quite challenging information

The peer support lead responded that peers get the same support as any member of staff and will have regular supervision with a line manager. Access, reflective practice, team meetings, whatever it is anyone else can do, but will also be put in regular supervisions that will be facilitated by someone who’s had experience of using their lived experience in the workplace, and which SLaM will ask all our new workers to do.

I also raised a query on why there is either a lack of carer peer supports or none at all, especially if service users get the majority of peer workers, peer befrienders, peer supporters. Carers are also using services, so where are all the peers?

It was noted by the peer lead that it has to be an evidence based initiative. So we need to have the evidence before they can start rolling it out. And at the moment, SLaM has evidence in regard to people with lived experience. So we know there’s loads of informal peer support that goes on for carers and meetings like this, but also just people getting to know one another. In her view, there probably will be. And I can’t imagine why wouldn’t work, with peers is supporting one another. Unfortunately at the moment it doesn’t look like SLaM going to follow that path.

Oxleas responded that they have a different view of carer peer workers than SLaM. Oxleas also have lived experienced practitioners who work in the trust and they have trained, experienced practitioners who have been carers, so they have broadened it so that includes anyone and the way that the roles and then people are employed as members of staff. their lived experience is an added extra. So you might be working in the board or in the health care system, but you are there with your lived experience, whether you’re a carer or a service user, and then that is the extra that you add to the role. Oxleas disagreed that carers were seperated from peer evidence based because how can NHS staff even begin to relate to carers?

There was a big discussion on the nature of peer support and on the peer support projects especially on the peer project regarding peer workers being placed in the Emergency department of Guys and St Thomas’s hospital.

There was also a very good question from another carer member regarding peer support and someone in a crisis, I think it went like this. As in terms of peer support, it’s relatively more needed when, when there’s a crisis, when a patient presents to an acute Ward, and this may be their first very first experience of the loved one, and experiencing mental health, rightly or wrongly, whatever the case may be, that is where that peer supporter is needed.

Plus we had several questions regarding if the involvement register was some form of peer support or if peer support was utilised across the involvement register.

The peer support lead did note that there is a problem on the way that the service works and particularly mental health services is that it’s not a very holistic approach. So one of the questions will be that the services not providing care for carers because that’s not their role. The MH services role is to provide care for service users. The problem is this, we know that if you support caregivers, then that’s going to have a beneficial impact on everyone including the service users. She admitted there needs to be a continued challenging of culture on how peer support works. It was mentioned to approach researchers regarding peer support at Kings college, but the Institute of Psychiatry, Psychology and Neuroscience was also mentioned.

The discussion went on for some time, but I think I have made this a very long blog post. This is the July’s update for the Lewisham BAME MH carers forum.

Joint Southwark & Lambeth MH Carers forum July 2020

Maudsley_Hospital_Main_BuildingWelcome to the July update of the MH carers forum.

The forum Encourages carers of those with mental health needs to get more engagement from services and to understand how mental health services work. Carers can also query them and compliment what they feel are going well. In attendance were Southwark Carers trustee, Lambeth carers hub mental health carer support. A few carers especially involved ones. The carer inpatient lead for Southwark and also the Carer lead and head of occupational service lead for Lambeth. The forum was also joined by staff and a governor from Guys and St Thomas to speak a bit about their mental health and carer’s strategy. We also had a young person demonstrate a new online application called “kooth”, aimed at young people.

Lee Roach from Lambeth Lambeth Hospital spoke about updates from Lambeth Hospital. He mentioned to the forum about staff who are carer champions over at the hospital. Staff work in a team effort, but not all of them are occupational therapist by background. Lee mentioned the different roles some of the staff do as some of them are running carers groups, some of them were maintaining carrier information boards.

Some events are being planned over at Lambeth hospital for carers. A recent event had a Junior psychiatrist, and occupational therapist and pharmacist talk to carers about questions that they had about medication and about diagnosis for their loved ones. Previously Lee wanted to establish a Carer champion in each of those six teams that were working out of the the Lambeth area. They made a little bit of progress and two or three members of staff were identified as carer champions with others who were keen to be involved.

lambeth-hospital

They even had a carer champion at community level, but unfortunately COVID-19 hit and services had to be put in lock down and what took place then was that the teams were reorganized and merged to cover services. Service leads were expecting a significant reduction in staff availability. So at the moment they are working to operational crisis levels.

Lee continued to state that for the 21st of August they plan to organize a meeting for carer champions. So they will get members of staff together alongside carers and aim to invite involvement from carers to update them on regarding the COVID period. The event will also share good practice and also to advise the new carer champions about what the expectations are for them.

The Lambeth hospital carer and services lead spoke how important that they make sure that the clinicians are thinking about carers and also to make sure that they are aware of all those people that are involved in that person’s life as much as possible.

It is also important that staff record carer’s details on SLaM’s patient record system so that should anything happen to the patient then the clinicians able to stay in contact with carers. Lee mentioned it is important carers are offered engagement and support plans for their needs, not just the need to services and talk about what some of the needs they might have.

Lee excitedly mentioned the that they are developing some exercise classes for carers. These exercise groups are being organized so that information can get to the clinicians and the carers in Lambeth as quickly as possible. On the 7th of September they are going to organize some events for the community mental health teams in Lambeth to raise the profile of carers and the needs of carers and I’m looking for volunteers and people who are on the involvement register. Lee felt the most effective way of communicating with clinicians about the needs of carers and the importance of involving carers, in the care of their loved ones, is for carers to tell their story and to hear that narrative of the carer’s experience.

The update impressed the chair of Southwark carers who was interested to know more about carer champions. I also raised the idea if Lambeth are looking to employ a Lambeth carers inpatient lead as for what Southwark have. I also wanted to know more about the role of Anna Penn-Carruthers who is a centre lead at Streatham living well centre, she was unable to attend the forum, but will come at a future date. I also wanted to know the situation with COVID-19 affecting Lambeth services.

For some time no carer is allowed on the Lambeth hospital site and that was the same for the Maudsley site as well. So no physical visits allowed. That’s now changed and carers are able to visit. But it needs to be by appointment now they have got rooms allocated on the Lambeth hospital site for the carer’s visits to take place. The thing is COVID-19 has made things much more restrictive. Lee feels the challenges for everyone over this period has been utilizing virtual meeting spaces and in how they are using the software mircrosoft teams. Things are moving back more to where they were before, but they are still very limited in terms of how staff visit people’s homes, organizing meetings and limiting the amount of unnecessary contact.

Kooth application

Next up for the Joint Southwark and Lambeth carer forum was Chanelle from XenZone to speak about Kooth which is an online mental wellbeing community. Kooth gives young people access to a community of peers and a team of experienced counsellors. Kooth is accessible for any young person who lives works or studies in Lambeth from the age of 10 to 26 years old.

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The good thing about Kooth is that it is free mental health support, but obviously not a replacement for the NHS or any mental health services. Kooth also has a link of different services that young people can contact when they’re in a crisis, which would be national services, because Kooth is not a crisis service is also something that people can use alongside with those those resources.

Shanelle showed us a quick video about Kooth, which can be seen from below.

Video of Kooth demonstation

After the video Shanelle explained what it’s like to sign up to kooth via a demonstration. She mentioned that when you sign up to kooth that it is very simple. So as shown in the video, it is an anonymous service. So they don’t ask people for their names or their address or anything that identifies them. Kooth only asks for basic demographic data that’s taken such as their gender, their ethnicity and age. And the reason they ask for their age is that they can make the content appropriate to the age of that young person.

Kooth has many different links where one of them allows a young person to look into the different counselors, as they can see different biographies about them about whatever they’ve chosen to speak about. Kooth is available in the boroughs of Lambeth, Greenwich, Bromely, Bexley and Southwark for the ages of 10 to 25.

Staff from both South London & Maudsley and Guys & St Thomas were interested to developing links to Kooth for referring to it as an additional resource.

Guys and St Thomas Carers Strategy

Next up were staff from Guys and St Thomas regarding their carer and mental health strategies. I feel part of the aim of this forum is to allow carers what services, policies and strategies are being done to aid in supporting their role. We were joined by Jackie Waghorn who is their new Mental Health lead for that trust taking over Caroline Sweeney. We were also joined by Sarah Allen who is the Head of Patient Experience at Guys and St Thomas talking about their carer’s strategy.

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Guys and St Thomas also sent Nikki who is one of the dementia, clinical nurse specialist on dementia and delirium services and they are inpatient based who their main role is to provide care and support to patients and their carers and staff within the inpatient settings. Nikki spoke about how they support patients by ensuring that staff carry out the principles of the St Johns campaign such as ensuring that flexible working, flexible plans are committed. Other things done are getting out carer surveys out to carers so that they can really understand that they have a voice and staff can understand what carers needs are. The staff normally carry out these carer’s surveys when carers come into the wards to visit their loved ones, and then staff can go through the survey with them. Otherwise, they send out carer surveys via posts and staff collect them.

Next to update the forum was Sarah Allen who is Hear fo Patient experience, she came to talk about the NHS trusts carer’s strategy and carer’s policies that are under review. There are 3 priorities so far which the trust will be looking to review.

1. Providing carer’s network days which are for local residents in Lambeth and Southwark, plus GSTT staff who may also be carers. The aim of these network days is to develop carer’s skills further in sort of key areas is what’s known as key skill stations. So sort of little mini sessions on different aspects of caring for someone. So that ranges from things like providing personal care and mouth care, to things like on dementia and delirium.

2. The other priority is they have a carer’s passport at the trust, but it’s not quite as well embedded as they would like. But really the role of that document is to support staff in understanding and recognizing the role of carers and the part they have to play in terms of the care and sort of providing information and understanding on the condition needs and preferences of the patient.

3. The final priority really is around for GSTT staff. This being that some of their staff are carers and is pretty much recognizing that their own staff do you have caring responsibilities as well often in addition to being parents, for example, that may also have young children that may also have a responsibility. They’re looking after an older parent or somebody else within their extended family or Friendship Circle.

The chair of Southwark carers was interested to hear more about Guys & St Thomas’s carers passport. She was also interested in the networking days.

Next we had Jackie Waghorn speak about her role as the the new mental health lead at Thomas’s. Jackie has been in post for six weeks, so is pretty new and still trying to find her feet in the organization.

st thomas

She has has come from Croydon, where she was doing a very similar role running health services. Prior to that. she worked in offices and mental health trust for many years, managing crisis and mental health services and working in crisis and mental health services.

Guys and St Thomas Mental Health Strategy

Jackie spoke more about GSTT mental health strategy which was launced on Mental Health Day and the strategy lasts up till October 2022. In developing the strategy, this strategy was devised by her predecessor, Caroline Sweeney. And in devising this strategy, she did consult with a number of different stakeholders, including patients and carers. Jackie was not sure what any of the forum members were involved in that.

What the strategy does and in, in supporting carers is not quite specific, becaue it’s basically divided up into three sections which are patients, people and partnerships. And it really is just thinking about how they can involve carers and how they can support carers in each different section. Jackie is looking to basically develop a group which would oversee policies and things to make sure that mental health is considered in everything that GSTT do. Next we heard from Georgie Smith who has recently recruited into a new role which is Mental Health Improvement lead.

Her role is and the work that I’ll be doing is is carrying out several projects under the name of Lilly Sterner, who was a patient who left a legacy. In those projects she will focus around improving mental health awareness and improving mental health delivery within the trust of guys and St Thomas. Then Paula one of the governors from Guys and St Thomas NHS Trust. She was interested to hear if there was enough support within the community for mental health and also onthe strategies that the trust will be administering?

I was interested in how the trust engages with patients and the public and if there were staff at guys who has a focus on carers. Sarah mentioned that they try quite hard to actually involve patients and carers in sort of the redesign of pathways and redesign of services. This is done via the patient and public engagement team. It was also mentioned that there has been a number of staff trained up to become what’s known as mind and body champions, the Mind Body Program from kings health partnerships, has done a lot of training for keep just staff focused mental health awareness. So they have mental health champions and obviously part of mental health is care awareness. It will be good to see if GSTT can work with the joint Lambeth and Southwark MH carers forum as their new Mental Health lead continues her role, as the forum aims to raise the profile of mental health carers.

Southwark inpatient carers lead update

The last update was from David Meyrick who is the Southwark carers lead for inpatient wards. David reported that all the Southwark Wards are open, were wards that were moved to other boroughs are now back in Southwark. There is other good news that the carer champion roles are becoming more relevant and active. SLaM have also just finished a project on one of the Wards listening in action project. This has been a project to make the ward more family friendly. There has also been an improvement to the waiting area the visiting area.

The waiting room has been redesigned search cordoned off to give a bit more privacy and social distancing plus two families can to visit at once rather than a portable partition so it’s a bit more than welcoming and relaxing area and and also a lot of work on the leaflets and literature produced for carers and help make it more informative and more family friendly from that perspective.

We also had an update from carer peer supporter Annette on how she is co-facilitating carer support groups online and how the peer support role empowers her to support families and carers.