Category Archives: Carers Lewisham MH Forum

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

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 Mental Health Carers forum March 2021

Welcome to a brief update of our March mental health carers forum for the borough of Lewisham. The carer’s forum is chaired by unpaid carer Matthew Mckenzie who runs many engagement and peer groups in South London aimed at families and carers who care for someone suffering mental illness or mental distress.

The speakers for the month of March 2021 were

British Institute of human rights.
Wendy Dewhirst SLaM new Community manager for Lewisham.

BRITISH INSTITUTE OF HUMAN RIGHTS PRESENTS.

It is clear that unpaid carers have rights, otherwise we would not have the ‘Care Act 2014’, but what is not clear is how unpaid carer rights are linked into human rights. This is why I am linking carers to understand more about human rights.

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Lewisham Mental Health Carers forum February 2021

Here is the update for the February Lewisham Mental Health Carer forum. The forum is aimed at those who care for someone with a mental illness. Most who attend are unpaid family carers. For this forum we were joined by the CQC inspector for GP surguries and Professor Luke Clements from Leeds University who is an expert on carer’s rights.

As for the members of the forum, carer members were from South West London, Lewisham and Greenwich where I often host other carer forums or support groups. We were even joined by West London NHS trust staff who were interested in how a carer led forum runs, plus also SLaM early intevention staff.

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Lewisham Mental Health Carers forum January 2021

Welcome to the first update of the first carer forum for January. These carer forums are aimed at those caring for someone with mental illness. The forums provided engagement from mental health services to educate and involve carers regarding services provided.

Carers can also network together and slowly build up empowerment. For the month of January we had Lewisham health commissioner Natalie Sutherland talk about the following.

  • Her role at the Clinical Commissioning Group
  • Why the CCGs merged
  • Their focus on mental health
  • Pressures on the health system due to corona virus
  • Initiatives for families and carers.

Also in attendance were carer members from Lewisham and some from other areas interested in mental health services. We also had a few researchers from universities wanted to speak to carers about their research.

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Lewisham Mental Health Carers forum October 2020

Welcome to a brief update on the October Mental Health carers forum for Lewisham. I have been so busy of late, that I did not have much time to do any writing. For the carers forum, the guest presenters were Carol Burtt who is a Consultant Clinical Psychologist for Lewisham and she spoke more about IAPTs in Lewisham.

We also had Susan George from the CQC who inspects GP services in Lewisham engaging and updating carer members of the forum.

Going back to Carol, she spoke about how the service IAPTs provides are primary care where they essentially provide help for people with mild to moderate psychological difficulties such as mild to moderate depression and or anxiety. Anxiety might include panic attacks, or a state of worry. Carol talked the group through such symptoms like generalized anxiety disorder, social anxiety, health anxiety, some OCD, obsessive compulsive disorder, some relationship difficulties that might be leading to depression or anxiety.

Carol spoke about how mental health can cause some relationship difficulties that might be leading to depression or anxiety. So in fact, it might be more likely to be something that carers might experience themselves rather than the people that they are caring for. Carol then talked about how busy the service is, being that they had 880 referrals last month and they processed about 600 people who were seen last month.

For people to access IAPTs, you can get a telephone assessment within a few days, and this is what IAPTs is aiming for at the moment so that we can have a rapid response to people’s referrals. This is so people can get to speak to a clinician within a week, and a chance to talk about explaining the difficulties. People can get referred and then get directed to the most appropriate treatment.

Certainly last year, SLaM IAPTs did increase a lot of digital input so that people can actually have some treatments via online programs, which SLaM call computerized CBT, which could be an initial treatment. Carers can access that very quickly. So people can start such treatments within a week of having had your first telephone assessment with somebody. So that’s the benefit of that. Carol mentioned that IAPTs online is obviously not for everybody, some of the us know, that some people will want to have a direct face to face contact at the moment, obviously, with the COVID situation where SLaM working remotely.

Carol then explained more about the service as in how people are allocated to a psychological well being practitioner, SLaM have about 20 of those clinicians which Carol manages herself. These clinicians have had a training in a low intensity CBT cognitive behavioral therapy, so they’re trying to provide what we call Guided Self Help.

Carol then gave us an example of how people would have access to these different programs. One would be for depression. One would be for anxiety, one for social anxiety. The person would have some tasks and some information that they would have to deal with each week. Then each week, it finishes with checking in with person, either online or by telephone to see how you’re getting on.

Still, if people felt that their mental health was a bit more complicated, and SLaM felt that you need it, then any input with a psychologist or a cognitive behavioral therapist, or a counselor would be a three to four months, wait a moment.

Carol also explained that before the COVID situation, they were providing face to face workshops in groups where people actually attended their clinics, but since the pandemic has affected things, they are now looking at more online groups and workshops. Carol reminded us about our BAME forum where her colleague, Elaine presented and how she is leading on the development of some workshops, particularly for local communities in Lewisham.

QUESTIONS FROM THE CARER MEMBERS

A number of questions were asked of Carol from our members. One of the group members was interested in the following question on if the IAPTs service helps those with addictions when people have got the problems and they’re addicted smoking, drinking alcohol, or even taking illegal drugs?

Carol responded that they do is make an assessment as to whether addiction is a primary problem, or even if addiction is the biggest problem or there’s an element of depression and anxiety. For example, somebody who’s got a very serious drinking problem or significantly problem, then they would advise them to go to a specialist addiction service. Carol also repeated that they are trying to look at different ways in which people can access this help earlier, as soon as possible. They are looking at providing these online interventions, and online workshops as soon as possible so that people get some help. Very quickly, before I can say, for such problems develop further.

Another carer queried the struggles they have when the cared for has trouble accessing the service, especially from a mental health trust. The carer does not want to intervene, but notices how difficult it is for the caree to get lost in trying to access IAPT services. Carol mentioned that unfortunately, it’s the way things are organized. And they have a secondary care psychology that is very separate from primary care. So they don’t provide a service for people who’ve been admitted to secondary care psychology, which is a separate.

Another carer made a statement rather than a question and pointed out that she was referred to IAPTs on a series of six well-being workshops. She felt that the CBT there, she didn’t find that useful because it was too general.

CQC PRESENTS UPDATES

Susan from the CQC was listening closely to what carer members questioned or queried. Susan felt that its really important for representatives from CQC to hear our stories, and she really appreciates everything that was mentioned today. Susan continued that it’s also important because she is an inspector of GP Practices and part of her job is to ask providers what they’re doing in terms of providing care and support for carers. So it’s vitally important for her to hear carer members own experiences.

Susan mentioned that there was not too much time, but she would do just a quick summary of things she has been involved with, and what the CQC are doing at the moment. The CQC are looking around at communication with patients and patient populations, particularly with carers. The CQC are looking at a number of scenes of regarding the pandemic and how services have communicated with people.

Since the GP practices has started to shut their doors, the CQC are interested on what the GPs do to open up again, what are the GPs doing to tell people that they are open again, that they’re available for routine appointments? How are they telling people about the services that are available?

The CQC are also looking at sorts of communications, the CQC are looking at how GPS are maintaining equality of access or equity of access for people. There has been a huge change digitally in terms of the type of appointments and consultations that people will have. Not everybody is fluent in English or has access to digital means of equipment or resources.

Susan pointed out that some people who may find that trying to navigate their way through this new online world of appointments is baffling and terrifying. So the CQC are also looking at developing, how they talk to the GPs during inspections. The CQC are interested in what the GPs are doing to make sure that they’re communicating clearly with patient’s about the changes to appointments. Explaining to patients about the difference on treating for an emergency appointment, an urgent appointment, a routine appointment. There is a lot of assumptions that everybody knows all these phrases mean.

Susan updated us that the CQC have just published the “State of care 2019” for 2020. The report is available on the website, however Susan kindly sent us the link in the online zoom session.

The report is especially important because it pulls together some of the themes that the CQC have been looking at during COVID-19 and also pre COVID. The CQC are looking at some of the gaps in access to good quality care, especially mental health care. The CQC are also looking at the themes around system health inequalities around support and care for our better communities.

The CQC are also looking at communication and are interested in conflicting messages or conflicting nasty messages and guidance. It’s not always clear for patients and the CQC are interested in how GPs are engaging with their BAME communities.

Other things Susan pointed out was that the CQC have been working on questions about safe care and treatment and about the support for people living with mental health illness. The CQC are also asking providers specifically about how to be monitoring carers health and safety during the pandemic, have they been maintaining their registered unpaid carers and so what steps have the GPs taken to enhance the identification and management of the mental health issues of people living with mental health that includes people with dementia.

There were a lot of questions from the forum regarding the state of carer registers, some members are aware of the pressures GPs are under especially with new contracts, but others are keen to see where carers are being referred to and if social perscribers are doing their role.

HEALTHWATCH LEWISHAM ENGAGES WITH CARER MEMBERS

Healthwatch were there to listen to carer members regarding health services.

Healthwatch Lewisham are an independent charity. They are the patient champion for people who use health and social care services and so they listen to people on what’s going well on health services, what’s not going well.

Healthwatch Lewisham collect that feedback from patients and then at the end of every quarter they analyze and report back. Those reports are presented to sort of people in the borough of Lewisham that have the power to make change happen to like commissioners.

Healthwatch Lewisham also do project work and one of their recent projects was looking at the impact of the COVID-19 on Lewisham residents. That report has now been published. Healthwatch also has an advocacy service. So if anybody has complained about NHS service that they’ve used, and they can go through their advocacy service. So far healthwatch Lewisham have three advocates, and they basically help people through navigate the health system.

The reason Healthwatch Lewisham were at the forum was because they wanted to gather some feedback from people’s experiences with health and social care services. They were interested in feedback regarding GPs, hospitals, pharmacies, dentists, opticians, mental health services, Community Services, basically anything that carers and the person they care for has accessed.

Healthwatch Lewisham were kind enough to recognize that it’s a group environment and sometimes people don’t feel comfortable sharing their experiences. So even after the forum, members could feedback via the healthwatch email or site where they sent the link.

CARERS FEEDBACK TO HEALTHWATCH LEWISHAM.

Many of the group members fedback experiences on the following.

1) Lewisham Hospital
2) GP appointments
3) Positive aspects of using GPs
4) Dealing with receptionists
5) Dental appointments

This was the update for October at our Lewisham Mental Health carers forum.

Lewisham Mental Health Carers forum September 2020

Welcome to September’s 2020 update of the Lewisham Mental Health carer forum. The forum is run via Zoom to protect attendees from the risk of Corona Virus. The forum usually runs from Carers Lewisham centre, but is now online. The carer forum gives carers in the borough a chance to engage with Mental Health and Local authority services. It is a form of empowerment for carers and a way to gain insight and knowledge.

The forum also gives carers a chance to work together with health providers as co-production often gets raised. For the month of September we had a special “Carer Peer support” event, where many other carers were invited from my other carer groups, especially some from Greenwich who were wondering what does it mean when a mental health trusts champions peer support. Carer peer support has a different focus though, as it is aimed at families and carers. It also must be mentioned that peer support does not have to be a service that comes from the mental health trust, but carers themselves can also practice it.

We were joined by Peer speciallist and carer Donald robertson from sussex NHS partnership over in Brighton, we were also joined by Shelagh Musgrave from Birmingham and Soulihil NHS trust. Both were at the forum to educate and explain the importance of carer peer support at NHS trusts and services. We were also joined by Rachel Ellis who is South London & Maudsley NHS deputy head of inclusion and lead for peer work.

As usual the forum was supported by SLaM Jane Lyons who is the Croydon & Lewisham Involvement lead, however our CQC member could not make the forum today and has requested an update. Some of the things mentioned by the other NHS trusts peer leads should be of an interest to NHS England as there were views regarding peer support pilots across 3 NHS sites.

Sussex Partnership NHS Foundation Trust Carer peer support

Donald Robertson spoke at length of his role over at Sussex MH NHS Trust. He started off as a carer who cared for his wife for many years before slowly becoming more involved as peer specialist at his mental health trust. He now works within the NHS. So he feels like he can inhabit all three corners of the triangle of care in different ways. Due to being a carer, going through difficult times and being a health professional. Donald was trained as a social worker based on his own lived experience.

Donald mentioned peer support is about using his lived experience as a resource. It’s about changing things and how he wouldn’t go back to some of the times his been through, he wouldn’t even give his worst enemy back to some of those times he had, but his glad it that happened, because it made him a stronger person for today. Don pointed out peer working is a bit special. and it’s not just about having the the lived experience, it’s about how you use it. Peer support is how you support somebody with without having to be competing to see who has got the worse symptoms.

HOW PEER SUPPORT WORKS

Donald usually meets or chats to carers reffered to the trusts peer support via video link or phone and asks them “What would be helpful for you” “We can talk regularly as one to one around 15 minutes at a time. He would then confirm that the peer support can be flexible for carers to engage with him or donald could even be in contact with carers by text.

Donald spoke about the carers groups. One of the main groups actually existed before the COVID situation. Don mentioned that he sort od reshaped the carers group and things started settling in their place. The peer group has good numbers where 10 to 16 carers attend. So the peer group is really became very successful. Don asked that people to come to that carers peer group first or to call because he understands that when a carer is struggling? especially if its isolation or if they feel like they are the only one in such situation. Then being in the group where people just get it and understand where you’re coming from almost without having to say anything.

Don was glad to see veteran carers take the lead and set up a workshop to showcase the aim of peer support and the peer support group. There were challenges and struggles as other means to connect were difficult, especially connecting through social media or trying to work out how carers connected through whatsapp, plus NHS England set up something that is aimed to protect people’s anonymity which is very important, but also reduces the chance for carers to connect with each other.

It was also reported that when COVID-19 arrived around spring time, it shook peer support up a bit, because Don was not fully comfortable providing peer support online. This was especially when someone is telling you a difficult and emotional story only for the connection to drop, plus it misses several aspects of peer support including reading body language and giving others the chance to speak. Donald wanted to make the most of his time as being part of the NHS team when it comes to providing carer peer support, he did not want to duplicate what was provided there already and wanted to focus on giving more options for carers.

DESCRIPTION OF CARER PEER PATHWAY

I then took the oppertunity to ask Donald Robertson about his NHS Trusts flow chat regarding carer peer support. This was one way carers can examine how a mental health trust can provide support without having to read into any difficult jargon. It also gives an idea that the NHS trust is interested in carers and has a pathway on carers.

Donald told the forum that the chart is focused on carers supporting people having a first episode of psychosis, it’s about the evidence. So if you put some more intensive support in for some carers, that will mean that they will not end up in a long term service user. So the client service user is taken on and our standard assessment period is about six weeks.

There’s a lot of getting to know somebody before it’s completely clear, whether it is psychosis, or if there’s other factors, and Don actually gets involved earlier to help signpost to other services. Still, the lead practitioner identifies the carers and if the carer does not want support so close to the NHS Team then there is always independant carer support at Brighton’s carers hub. The mental health support team will always endeavor to keep the carer involved as much as they can.

You can find out more about Sussex NHS Partnership below.

https://www.sussexpartnership.nhs.uk/

QUESTIONS FROM THE FORUM

I then opened up the forum for carer members to ask questions regarding carer peer support at Sussex mental health NHS partnership.

A question on Older adults was of interest to a carer member. He was interested on what information did Donald give out the to older adult carers who are caring for someone with dementia. The carer was wondering if the pathways were more of a one shoe fits all policy. The carer member was also interested in sigma from the BAME community over in Brighton and wondered if Donald had any connection to that group.

Donald responded that it’s important to avoid the one size fits all policy. He engages with carers more as a person centered approach. So Donald is asking what the person in front of me needs. In the Services Donald works in it is all about people who have experience psychosis for the first time, traditionally that’s dominated by people in their late teens or 20s. So there’s a lot of work to be done about helping carers to acknowledge that they are carers. Donald feels his stereotype of a carer is somebody who is helping someone getting dressed, and maybe spoon feeds them, but he himself has never done that. His caring was much more about emotional support. And, rather than kind of fairly practical stuff even though they’re both important, but they are quite different.

I mentioned to the carer that since Sussex NHS partnership was a large trust that maybe Donald was not involved in the dementia service or BAME engagement, but there can always be a forum where we examine how other trusts engage with the BAME community.

Another carer member wanted to make a statement rather than a question, she felt so much resonates with her on what Donald spoke about. She pointed out 3 things, the First point was on how Donald mentioned the typical age group, that someone gets psychosis and some of the other illnesses or some of the other mental health illnesses. Her son fell ill when he was in his late teens. She still is not sure that her son’s illness has been fully identified and what caused it. Her Second statement was how it affected her so much that she couldn’t move on with her life, it was very difficult for her to move on.

Her Third and last statement was on how she was assisting my brother and even though her mother had 10 of us, she ended having to be the one taking on the caring for her brother, while most of the other members of the family want to know what’s going on with him they are not offering to help.

Donald responded and agreed that when one of the carers who was in that situation he remembered them telling him to “help them is help the people around me to not come through me” Donald remembered that he did a work with about four or five different people from that family. He felt it’s quite natural, because people are scared, it’s easier to get it second hand in some ways, because the main carer is that kind of buffer.

Another carer raised the point about my recently released book and if the CCG would take the oppertunity to help promote the book due to my high profile of raising carer awareness. A recent update is SLaM has purchased my book to the library under their carer’s section, although the carer mentioned the book should be standard reading on training staff about carer identity.

Birmingham and Soulihil NHS Trust carer peer support

The forum was given a chance to hear from another mental health trust on carer peer support. We heard from Shelagh Musgrave who is the Family Carer Peer Support Worker on the Women’s Secure Blended Service Team.

She started in her role nine months ago, but she was honest that there are challenges as she felt there are still NHS collegues who do not embrace family/carer involvement in getting peer support. She felt there can be a lack of communication to the carer and it needs to happen more often. This is particularly a problem when confidentiality continues to block carer involvement and then causes families to back out of recieving any other means of support.

She mentioned it can also be quite challenging to encourage colleagues at the NHS to understand that actually families and carers have shared information with them so then it’s no longer confidential. So if they have shared something with us and I tried to speak with colleagues about it, I surely can talk about it to them because it isn’t confidential anymore. Yet, this is not often the case as if something keeps blocking that triangle of care regarding families and carers.

Another issue with confidentiality is Shelagh’s role is actually with a charity rather than embedded with the NHS trust and even then confidentiality can sometimes block her off from getting involved or finding out what is going on. For example because she is peer support worker she might have picked up on a self harm incident and would need to update the family on what could be happening. She felt it’s really hard to get information as a carer and they just have to sit with it. It is like the carer is left wondering what’s happened this time.

The reality is that the carer be informed of these incidents, because it’s relevant to the person that cares for them, but unfortunately the culture of care is that carer may get shut out, which leads to impact or the trauma that might be taking place with the family and carer is left, as it always has been.

Shelagh mentioned that the NHS Trust actually have a family/carer pathway modeled within the trust, although it’s in the very early days. Still there is a problem as there is a seperate service user pathway and that process has created challenges as well, because it has led to some of her works going on hold.

Still there has been good engagement where it has made a great difference for families. Shelagh mentions she goes on to contact carers and get feedback from them, which is incredibly positive. Shelagh stats that she has a very proactive approach to being in touch with families and carers and she essentially makes my initial contact with them introduce herself explaining what her role is.

Shelagh does ask carers, what would be helpful for them. But she also makes them aware that she will be touching base with them regularly. So her approach tends to be, and she will call and if you don’t want to speak to me, that’s absolutely fine. I will check in on a monthly basis and I wouldn’t take offense, if you tell me you don’t want to hear back from me going forwards. Oddly enough no carer has actually told her that they do not want to hear from her.

Still Shelagh does not speak to every carer that’s on the books and she does make contact with as many of them as she can, but is not permitted to contact some because there are some for clinical reasons that I’ve been asked not to be in touch with, which she felt was a shame, but she can’t argue with that because she does agree with that everybody should be entitled to access peer support, if they wish and she do think it should be your decision, I do think it should be a clinical decision.

So she has ongoing contact, which ranges from anything from every fortnight to every two months. What she also do is feed concerns that the family have back into the a clinician. So for example, we had a young woman who was being discharged. Her family had attended the discharge CTA section 117 meeting, but actually hadn’t been given any contact details for the community care coordinator or the accommodation manager. So I was able to feed that information in the team to get contact details from the team and was able to get information to that family.

As far as the NHS knows they were aware that she has ongoing contact with families, but what she finds really interesting is a professional at the NHS states to her that our contract has to be meaningful. What does this mean?

Well meaningful to who and when you drill down, meaningful contact seems to be viewed as contact that is going to provide information that’s relevant to the service user. So if Shelagh’s contact with the family is not going to provide the clinician with information that is useful and valuable to the service users care then there is little point in meeting the family, but Shelegh is against this culture, because in her role she is there to support the families and carers and I, if they happen to share something about services or have a team.

Shelagh does tell NHS professionals she works with right in the beginning, that she works for a charity in partnership with the NHS and has an honorary contract with the NHS. However she is not sure if it’s because she works in the charity or because the NHS hears the word peer that NHS professionals might stand back.

Shelegh feels the feedback she gets is the value of talking with somebody who has lived experience is “that you just get it” and the carer does not have to explain what things are like to me. Shelagh has lived through it. She feels because carers might be limited in communication if they are talking to an NHS professional, nurse or psychiatrist. There’s often a sense of well, what do you know? What do you know, you haven’t experienced it from my carer’s side? So how can you stand there and say this to me. Whereas carers sense if she says something to do them or listening to them, and they will often say to her but you do understand this, don’t you?

It’s like a shortcut has created in connecting with carers and families where you don’t have to explain to people, what it’s like to deal with your child who self harms and you don’t have to hide from people, or you don’t have to explain to people how heart wrenching it is to hear when your child says to you ” I don’t want to live anymore why dont you just let you die?”

You can find out more about Birmingham & Soulihil NHS Trust below.

https://www.bsmhft.nhs.uk/

Family Carer Peer Support Worker view on the future of carer peer support

Shelagh felt that there is a massive need for carer peer support workers. She is aware that carer peer support research is very limited. However, she thinks we have to look at is that the research into peer support itself shows its value. So why do we have to differentiate whether or not peer support is carer or service user we’re looking at here towards the value is of lived experience. Doesn’t matter what your lived experiences?

Personally, she don’t believe it does. And But clearly, there are people who work by the research. That being NICE (National Institute in Care & Excellence) works by the research, Shelagh mentioned that she is very upset wit NICE because of this and she think that’s really sad peer research is not extending to families and carers.

Shelegh feels when carer peer support is established and its on the ground then we can see the difference that it makes, she feels that does not matter, what the background of the lived experiences is and wonders is she the only person in the NHS trust, which has 4 and half thousand staff?

There is a definite barrier of some sort, by changing the way families and carers engaged. Shelagh thinks we need to be doing it. She thinks we need a top down and bottom up approach, which has to come together. Because if you don’t have the support from the senior management’s, you’re not going to have this sense of drive.

Shelagh hopes that over time, she hopes that more and more people will change and understand that families and carers are not just there to provide background information on the service user. Carers are the equal partners in the NHS and NHS professionals also have a responsibility to families and carers. Because if they don’t support the families and carers with somebody is in the inpatient setting and they just discharge them into their community that hasn’t been upskilled or that hasn’t been supported, then it’s good to keep that revolving door going on for decades.

South London & Maudsley Peer worker presents

Rachel who is SLaM’s lead for peer working thanked Don and Shelia for their experience and is eager to see what results in regards to NHS England’s pilot peer project. Rachel is interested in what worked and what didn’t work. She was also thinking very much about what was the feeling or thinking about peer support is it needs to be co produced. Rachel felt that we can’t just take the model from Birmingham or NHS England and then drop it down in South London and hope that it works.

What SLaM needs to look at is that we need to learn from what the carers want to help them relate and be involved and also engaging with the BAME community. We also want to make sure that we have something that we know works from the outset and avoid that one size fits policy, we need to be creative, and we hope to be working alongside our carers to make sure that we get it right.

Rachel feels the big questions and the elephant in the room is about money/resources and how state to the CCG or other people to make sure that kind of professionalized peer support is seen as important and something that they’re willing to fund that and I feel that’s where the carers forums like this really come into its own and making a guideline proposal around what you’d want from care with peer support.

Rachel mentioned it would be really useful for members to write something formal to the Commissioners about your needs and what you think professionalised peer support would look like. Rachel added what carers would think the benefits are to the CCG especially relating to the triangle of care.

So it’s not just around providing peer support and support for carers, but also making sure that that’s all linked in so we get a really good support for when someone’s discharged or someone’s community services. Its not only important support for carers, but it’s also seen as linking up care for the people who use SLaM’s services.

This concludes the September update for the Lewisham Mental Health carer forum.

Lewisham Mental Health Carers forum August 2020

133Welcome to the August update of the Lewisham Mental Health carer forum. This forum usually runs from the Carers Lewisham centre, but is now run online in order to avoid carers risking COVID-19 and taking it home to those they are caring for.

As a reminder the forum is an engagement, educational and empowerment group for those caring for someone with a mental illness. The mental health, health and local authority services are complex, ever changing and sometimes risks non-involvement or coproduction of carers and patients. The forum is a chance for carers to know what is happening in services and who is responsible for them.

South London & maudsley have been very supportive of the carer forums for over 5 years and counting. Still not only our local mental health trust engages with the forums. It now seems the Care Quality Commission is interested in grassroots forums.

The forum runs every last Tuesday of the month from 1 pm. For August we were joined by carers from other trusts including those in Greenwich and others from Southwest London. The carers were interested in how this forum runs and what they could take away from what was explained there.

Guest speakers were the CQC and also Lewisham’s Clinical Team Leader for mental health community services.

We started off by hearing from Susan George who is an inspector for the Care Quality Commission. Her main work is in inspecting GP practices. The CQC look at how they are complying with the regulations of the health and social care act, but also to look at the quality of care.

The inspectors from CQC recently visited my Lewisham BAME Mental Health carer forum and although they wanted more information on inspecting mental health services, it would be strange to say that GP practices were not involved. There is an extra twist, because the forums are carer forums the CQC are interested in how GPs are recording and identifying carers.

Quality-Care-Commission

So for August forum, the CQC were back to observe and engage with the forums closer than before. They are interested in becoming members.

Susan has been active for about two years and the look of the portfolio of GP practice in southeast London in Lewisham. Members are interested in the organisational structure of the CQC and what departments report to who and so on.

Susan continued by mentioning they want to improve their reporting on the quality of care provided by GPs for carers in the community. She feels there is definitely some work we can do together to try to improve the narrative in terms of how we report our findings in the area. She gave thanks to Natalie Parsons, who is a manager in the hospital’s Directorate at CQC.

The Lewisham Carers forum was also joined by SLaM’s involvement lead for Lewisham and Croydon. She also run’s the Lewisham advisory group that has raised several points for discussion with Lewisham health commissioners.

Susan mentioned that as an inspector she is particularly interested in the support that GP practices give their carers. It is vital for doctors and GP practices to identify patients who are carers, and that might include young carers as well.

She thinks it’s true to say that carers have certainly been affected by the change In the way that GPs are providing consultations, such as online consultations, and that, as an inspector, she is sort of looking closely at how access to these services change for people who may be vulnerable people with illness. This goes double for carers as well. It is a real challenge, because not everybody set up with online, facilities, internet and so on. Susan is also particularly interested as well around the space of health inequalities that have started to be talked about since COVID took hold, and particularly around the health inequalities in the BAME community. So it’s good for her to get to join your discussions in the forum.

GP Lewisham

Susan mentioned that one of the things we are trying to do is work across directorates. She feels forums like this one can help the CQC to share ideas about how they can improve and reporting on the quality of care for carers, especially when they go into GP practices, the CQC will expect to see their carer’s register. Plus the CQC will also want to see if the GPs are improving the number of carers that they’ve identified.

She thinks we do need to have more conversations within CQC. Natalie may have touched on this, and they are looking at how they can improve their our approach and methodology. So, at the moment, it’s still in the early stages. Still one of the areas has been identified on how the CQC can engage with providers to help to drive that improvement.

Questions from carer forum members

One carer was interested that the Care Act 2014 was released close to 6 years ago and feels change is not coming far enough. The carer feels that things have been going backwards due to cuts in services and local services. The carer asked Susan why are things taking so long?

Susan agreed in stating that it shouldnt have taken as long as it should. She does feel that there is real focus on it now. Its about the relationships the CQC can now build and listening to people like us and having frank conversations.

I did mention that to be fair, I do not think it’s completely the CQC’s fault, because there’s many other organizations including the local authorities. I mentioned that this forum struggles in getting a local voice because we can never find who or what is responsible for certain things.

Another carer was interested in how do the CQC capture carers feedback about the service they receive?

Susan responded that we do try to speak to people when we go on inspection and they pick up on information about how to feedback. There is also a chance to feedback on their website.

Susan mentioned that they also want GPs to publicize how carers can give feedback or leave feedback. So that we can also look at that on inspection. So the CQC will look to see whether GPs have got a system where they invite and asked feedback. If they have got posters in the waiting room, inviting carers to give feedback about the care and service they receive. The CQC can even also monitor phone calls and emails that we receive. So we’ll be looking at those quite closely.

gp-surgery

One carer member fedback on her experiences with her GP and how she experienced qualify of care for her and who she was looking after. The carer acknowledged that we all know the mental health is the Cinderella of the NHS. So you can see how many in all these directions that things are falling on the the unpaid carer. Susan agreed that the carer made a really good point about that sort of twofold awareness of the GP needs to have. The GP practice needs to have about not only identify with carers, but how is the carer is getting on with the person they care for

Another carer agreed that the online consultation for obvious reasons, was not going to be sufficient and a lot of people don’t know how to go online. Even if their GP sent them some information, it might not be always easy to access or to understand what the GP or drugstore have liaised with.

Susan agreed with the carers comment about how the lack of mental health focus on carers literature and leaflets. One of the things the CQC like to check when we go into the practice to inspect is that there’s lots of information for carers and that’s visible and perhaps using different languages. Susan from the CQC is also going to find out if they have an analytical team at CQC that helps to provide Some data for the next forum.

I mentioned that the way I see this forum is that carers can come together as almost as an empowerment. Besides since GPs are businesses anyway. So i would be interested to have like a list of GPs to have some rating in regards to how they are responding to carers. Plus how they engaged with them and what sort of initiatives are set aside for carers.

One more carer spoke about the difficultly she had when the surgery stated that she needed to bring her ‘cared for’ into surgery. Even though she escalated it and got through the practice manager, the surgery still insisted they couldn’t do anything due to confidentiality and this led to prescription issues.

Susan stated that they’re not allowed to ignore complaints and that they need to acknowledge your complaint within probably a couple of days, and they need to investigate it. Because when a patient complains, or when somebody complains to practice, it may well be that there are elements of how they provide a service that are actually falling short, and they’re not going to improve unless they investigate.

Susan raised an example of that learning can be shared with members of staff involved, and she felt you should definitely continue to raise that complaint to the GP practice and they should acknowledge your complaint and also give you a sort of timescale about how they’re going to investigate. The CQC always encourage people to complain directly.

General Manager for mental health in communities discussion

Stephenie Edwards introduced herself to the forum as the General Manager for communities. They are in the midst of and have been for some time of actually starting to transform some of their community services. Over the years Stephenie has been attending some of the carer forums, but she is retiring now. So it will be the last time that we actually see her at the forum.

Stephenie continued that they were starting on creating pilots last year and they have been going out to service users and carers just to actually gain some views and thoughts. One of the things that was brought up was around waiting times, for both clients and carers. What they have done is that they were changing around their front end about services, particularly in that where they were splitting their services into neighborhoods. They piloted the split initially from last March 2019 for neighborhood 1, and what used to be their assessment and liaison service where people can be referred by GPS, is actually now based within the Waldren GP centre in Depford, and so their nurses are Mental Health advisors, application specialist OT, social workers based on site.

stringio

Patients also go to other GP practices and they have what’s called a very quick triage. So GPs can request a service as soon as service users couldn’t be contacted if things were urgent within 24 to 48 hours.

Stephenie stated that they started in March two weeks into their pilot, but unfortunately they were hit with what the what the whole nation is dealing with the COVID-19 pandemic. This disrupted their systems and all of their plans. Still to some extent we were adaptive because they created groups to run from different sites and services, but at the moment, you can’t work face to face with people in group settings over time. To in some cases, online and the OTs are trying to work out other ways of working with service users that are face to face.

It was suggested by SLaM that the team launch another pilot for neighborhood three in Lewisham. Stephenie mentioned she was excited to say that she is going to meeting after this where they will be saying whether it’s safe or not to launch, neighborhood three. She anticipats it will be safe and start launching the day after the carers forum. The team have a new staff interface, that is a challenge to the launch. So what they have found Is that Deptford which is north of the borough is very different to South of the borough of Lewisham. One of the reasons is there are different communities there that they had to get to know in terms of meeting patients, but they are going around GP surgeries and asking if they can have some space to see people on GP sites.

Stephenie made a point that lots of people in the past, potentially felt stigmatized, by coming into community mental Health teams, we would have as much as possible we can see people just coming in for services within GP practices where you know, where where we can get, I think, any available space in GP surgery premium, but that’s what we’re hoping. And, and we have expanded or we’re in the process of psychological interventions for service users.

She feels this is a big thing because service users have told them for a long time that there needs to be more psychological intervention. And she thinks as it stands at the moment, we’ve increased our psychological retention by 15 new posts, however not all the people are in those posts at the moment, but they are recruiting to run the adverts are out. So there’ll be a lot more psychological intervention available.

That might be quite short term intervention or some longer term intervention, but it will be a standard model of care. So people will be assessed when they come in. And then from that assessment, it will be decided and agreed to what care plan and what an intervention would be best at that time for that person.

Traditionally, Stephenie’s team worked primarily with care coordinators who are managed care of a number of people, maybe 25 to 30 people. What she is having trouble with is actually recruiting nurses. And that’s been ongoing for the past four or five years. The thing is they have a number of vacant posts that they haven’t been able to recruit to repay agency costs equal to a higher premium. So when they have started to look nationwide, about how they can do things differently.

Questions from the carer members

One carer member was interested on who Stephenie’s successor would be. The CQC were also interested. Stephenie stated it was someone called Wendy Dewhirst she currently works in Southwark at their acute referral center. Wendy has worked for SLaM for a long time.

Another carer gave a suggestion that because one of the major things as people with mental health is, if they know this, their benefits is going to be stopped. It doesn’t take a genius to work out and it would send them spiraling. Some of them could end up being sectioned. That’s how bad things have got. Could you please have a specialist for PiP forms within the mental health team.

Stephenie explained that Bromley, Lewisham & Greenwich MIND are employed to help on this and they work with them. She mentioned they do a lot of work around benefits and are very skilled in it. They have also got vocational support staff and a lot of service users that they work with. Vocation workers themselves are absolutely experts in benefits, but the demand is so high that they can’t do that all themselves.

The carer replied that in the past a service couldn’t get help on benefit forms and that person just gave up. She knows it’s impacting mental health survivors and she knows this is going to have a knock on effect on service users which cause their mental health to deteriorate as well. Stephenie did admit that it’s going to get bigger with service users being furloughed maybe in October not having a job to go about, but she feels that’s where their vocation specialists will do all they can to help people retain their job.

Other carers are continuing the raise the matter of carer support workers, especially some years ago 2 SLaM carer support workers were lost and now no one has any understanding of carer support numbers. Stepehenie mentioned that a new carer support worker role will be introduced and mentioned this was a drive by Lisa Brian who heads adult social care in the borough. Denise O’brien is at the point of recruiting the carer support worker and they will be working with on strategy for carers in Lewisham. These adverts are going out either imminently or going out over the next four weeks. So it’ll probably take at least two to three months before carer support worker is actually in post. I requested that the advert also be sent to the group so carers can see what role the carer support worker will be employed for.

Another carer was interested in how community mental health services in the Borough of Lewisham were taking into account diversity issues of carers. Stephenie agreed that this should be a remit for all services across the country. She continued by stating Donna Heywood Sussex who is Lewisham’s Service Director has taken BAME issues very seriously and they are in the process of producing a BAME strategy. Plus they also have Leonie Down who is Lewisham Head of Occupational Therapy and Safeguarding Adults Lead working to engage the community and also get staff involved in the BAME strategy as well. She did state its worth asking Denise O’Brien to attend the forum to speak to carers about any carers strategy, but over the 5 years it has been difficult to get any insight into carer initatives in Lewisham and carers are wondering if there is co-production at a local authority level.

It was good news that the involvement lead will try again to get Denise to attend the forum and speak to carers about any initatives and we are really hoping things will be different this time. Lastly there was an update from Jane Lyons who is the involvement lead on getting patient systems to talk to each other. These being of patient records by with SLaM EPJs and GP patient systems.

This concludes the August update of the Lewisham MH carers forum. Next month 2 mental health trusts are to send their carer support leads to educate carers about the importance of carer peer support their carer peer support strategies.

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.

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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.

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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?

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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.

Lewisham MH Carers forum June 2020

133Welcome to the June update of the Lewisham mental health carers forum. A forum aimed at unpaid carers supporting someone close who has a mental illness. This is one of the 4 carer groups that I run per month. In attendance were our usual carer members along with representatives from Lewisham Healthwatch. The speakers from South London & Maudsley NHS trust being psychiatric Liaison staff and the lead from SLaM Patient Advice Liaison service. We were also joined by SLaMs involvement lead for Lewisham and Croydon, plus we were also joined by the Mental Health Lead of Lewisham and Greenwich Hospital trust.

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