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

A community that cares is a good one

Welcome to my latest blog. As a reminder my blog posts focus on mental health carers, what I mean about that is highlighting the caring experiences of those caring for someone with mental ill health or mental health needs. This latest blog post is about community, because when all is said and done for health and social care, it is how the outcomes impact the community.

Some would say to test good quality wellbeing and a caring community, you can literally pick an area in town and stand there to observe. If you see run down apartments, no one talking to each other, anti-social behaviour, lots of noise and people seeming unwell, then this is a prime example of a community in trouble. When we notice such things, it does not take long to think to ourselves who is responsible for all of this?

I am not saying that all communities are like this, but it is worthwhile to experience what I am mentioning. Of course don’t do this at night especially if the community is known for trouble. Perhaps you might be thinking to yourself, why is Matthew raising this in his blogsite? What has all this got to do with caring?

Well as you can see by my blog title “A community that cares is a good one”. The thing I am trying to point out is because we focus on caring being a personal and private experience. We make the mistake that caring only exists in small confined spaces. We also tend to think that caring can only be applied to those who are unwell and once that person has recovered, then caring can stop. This again does not take into context the importance of caring.

Caring in itself can be applied to so many things, not just the person in themselves, but to caring about the environment, caring about ourselves as in our own wellbeing, caring for the importance of education and caring for community. Make no mistake I am not saying to care about everything, since we do not care for racism, isolation, blaming others or being a general nuisance to others. It is what we care for that counts.

I am fully aware that caring for others, especially those close to us is not a forgone conclusion, since there are many challenges that needs to be worked upon, especially with the new Health and Care Bill 2021 (see my online carers newsletter for more detail). I urge those who are caring, carer reps and the general public to take interest in such bills because it will affect us all.

Going back to the idea of caring in itself, we must take note that a caring community cherishes the importance of not only strengthening caring for others but in caring overall, where a society brings caring about those close to us towards caring for the good of all of us. This is not a simple tasks and almost seems like a utopia because we all have different aims and agendas and I expect those to clash as people do not often see eye to eye, but not all communities are alike, if we find a bad community, then it cannot be the case ALL communities are bad as some are better off, we cannot also think that it is just down to money and resources, because there are people out there working very hard to bring out the best in their own communities.

What is wrong in wanting to live in a community that will reduce isolation, improve health and wellbeing, easier access to social care, less noise, pollution and anti-social behaviour? All these wants and desires being out the best in ourselves and makes us happier in the long run, but we need to understand this cannot be done without the emphasis on care or our mental wellbeing is at risk.

In the end, we are all responsible.

Bromley, Greenwich & Lewisham BAME Carer Forum June 2021

Welcome to a brief update of my BAME carers forum for June. The BAME carers forum is an online forum aimed at those who care for someone suffering mental illness, except the forum covers ethnic experiences regarding caring along with discussions on how serious mental illness affects minorities and diverse communities.

For June 2021 the speakers were

  • Faith Smith (carer) on her Section 136 project
  • Keisha York from BAME in Psychiatry & Psychology
  • Sharon Jennings of Goldsmiths University
  • Emma James Senior Policy Advisor at Barnardo’s
Continue reading →

SW London MH Carer Forum June 2021

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

For the South West London carers forum the following speakers were

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

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

South West London CCG presentation

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

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

The boroughs they cover are

Croydon
Kingston
Merton
Richmond
Sutton
Wandsworth

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

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

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

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

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

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

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

Dolly Sen presents

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

Dolly Sen

You can find more of Dolly’s work below.

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

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

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

Research Study: Improving safety in community-based mental healthcare.

Hello fellow carers. I have exciting research news for you.

Phoebe Averill who is a PhD Student of the Health Service and Population Research Department from Institute of Psychiatry, Psychology and Neuroscience. Is working on a research study about the safety of community-based mental health services. This is a nationwide research aimed at unpaid carers.

Please see below for details.

What is this study?

We are carrying out a study to find out about safety problems in community-based mental health services for adults. This research will help to increase awareness of the types of safety problems service users and carers experience in these services, as well as gathering ideas about how community mental healthcare could be made safer.

Taking part would involve participating in your choice of either a one-to-one interview, or a group discussion. Interviews or group discussions will be conducted remotely via a secure online platform (e.g. Zoom), and will last for up to one hour.

Who can take part?

We would like to speak to family members/ carers of adults who are using community-based mental health services. These include primary care (e.g. treatment and monitoring of a mental health condition by a GP), or secondary care mental health services (e.g. outpatient support from Crisis Resolution and Home Treatment team, or a Community Mental Health Team).

To take part, you must also be:

  • Over 18 years old.
  • Able to understand English sufficiently to take part in an interview or group discussion.
  • Able to provide informed consent.
  • Not currently using inpatient mental health services.

Who should I speak to if I am interested in taking part?

If you are interested in taking part, or would like more information, please contact Phoebe Averill at phoebe.averill@kcl.ac.uk.

Please note:

Carers will be offered a £15 shopping voucher in return for taking part.

Joint Southwark & Lambeth MH Carers forum June 2021

Welcome to June 2021 Joint Southwark & Lambeth mental health carer forum update. Below is a list of speakers for the carer forum.

  • Faith Smith – Unpaid carer on her 136 project
  • David Meyrick – Southwark inpatient carer lead updates on carer support.
  • Alice glover – SL&M Patient & carers involvement
  • Emily Holzhausen – Director of Policy and Public Affairs for Carers UK
  • Elinor Bradley – on gathering carer experiences for Royal College of Psychiatrist

Just a quick note that the Southwark & Lambeth carer’s forum runs once a month and seeks to help empower families and carers who are caring for someone suffering mental ill health. The idea is for families and carers to know what is going on and also to hold to account, while getting educated about unpaid carers, health and social care.

  • Faith Smith presentS ON 136 PROJECT

Faith who is one of the carers involved at SL&M (South London & Maudsley) involvement register, basically involvement scheme for patients and carers. Faith is also a member of several of my carer groups. Faith mentioned she is a carer advocate and is working on a new project that she would like to introduce to us this afternoon. The project is around the section 136 of the Mental Health Act. Section 136 of the Mental Health Act is actually a section that gives the police the power to remove a person from a public place when they appear to be suffering from a mental disorder to a place of safety.

The place of safety could be to a hospital or to police station. We all know that those those kinds of interactions do not always go well and the outcomes are not always what we would like. So she has been asked to set up and share what is going to be called a Pan London, section 136 carers board. The aim of the group is to establish a solution which a focus group of experts by experience, which would be a group of carers and service users experts by experience.

The idea is that the group focuses on coproduction, a safe environment, holistic approach, which would then in turn lead to better outcomes.

  • David Meyrick SL&M Southwark Inpatient carers lead.

Next to speak was David Meyrick who works hard to promote carer inclusion on inpatient wards. David wanted to speak about the carer champion roles and how that works on SL&M inpatient settings.

So across the trust, every team should have carer champion either either one or two, on the wards, and so that we have two champions for each team. The idea is that the kind of champion will lead on the work that team does for me and carers, but not in a way that they get left with all the work for carer support within that team.

What we want to do is encourage staff to create an environment where the whole team has carers on a focus for evidence business the same way that we approach safeguarding, for instance, safeguarding is ever in business.

What you want to do as carer champion is to be more trained, be more aware and have more case knowledge and skills around carers, but use that to support their colleagues so that we get a consistent level of support for carers. So currently we have two carer champions, each team has currently, in the inpatient setting, that can be a little bit of a challenge, because it’s a high turnover staff. David has been busy with carer welcome packs to give to families and carers on the wards and continuing with his carer support groups.

  • Alice Glover SL&M public and patient involvement

Alice wanted to talk a little bit about involvement. She wanted to be a little flexible on the issue of involvement because she not sure what members wanted to know regarding involvement and co-production. Alice was happy for anyone to put in questions in the Zoom chat or even interrupt her presentation.
Alice gave a quick overview of the involvement side of things. Alice covers Lambeth and Southwark, but for Croydon and Lewisham that is covered by Jane Lyons and other boroughs and directorates. Alice feels the whole thing about involvement is about how we’re improving and developing our mental health services, and how we’re improving people’s experience by people who use our services and people who care for them. The important thing is that as a mental health trust, we are listening to people’s experiences and those experiences are influencing changes within those services.

So there’s lots of ways that people are involved in terms of sharing their experiences from filling in satisfaction questionnaires, with specific questionnaires for carers. She knows David has done some really good work to encourage carers to fill in satisfaction questionnaires on the wards so that we can start to understand how carers are experiencing our services. Where it is not just about how their loved ones are experiencing things, but actually how carers also experience services.

As a mental health trust we look at complaints, and look at incidents and even compliments. So there are many ways of how we try and understand how carers are experiencing SL&M services, but also on behalf of their loved ones. Alice continued to explain other forms of involvement including the involvement register, which is basically a list of people who have been through a process and it is for people with lived experience of using our services, or as a family member or carer.

She is aware that there is at least 5 people at the forum who are on SL&M’s involvement, which they may want to say something about their experiences of being on the involvement register. Alice just wanted to say, they are always encouraging more carers to join our involved register, at the same time recognizing the limitations that people have on their time and totally understand that people don’t always have the availability just because of the other things going on in their life. Not least of which may be caring for their loved one.

The involvement register can be a flexible way of getting involved and being paid for your time. It means that you can you have opportunities to get involved in projects, sharing experiences as a carer in a way to try and influence change in terms of how services are developed.

  • Emily Holzhausen from Carers UK presents

Emily from Carers UK was delighted to be at such a carer-led forum and wanted to mention how she met Matthew quite a few years ago and I was so impressed with how he spoke about carer involvement at mental health trusts. She also wanted to mention how impressed she is with Matthew as he advocates for carers in regards to national work, because he really draws on the experience of working with unpaid carers and their stories. Emily enjoyed the discussions regarding mental health services and how unpaid carers experience involvement.

Emily has been around for many years campaigning on the unpaid carers movement, but she does wonder whether with some of the engagement and involvement is very well aware around the benefits issues with those payments. Emily wondered if it’s possible to be flexible around some of the expenses, for instance maybe paying for WiFi or data or something like that to help carers engage in a different way. If they can’t take the payment because of benefits.

Emily continued to speak about Carers Week 2021 and talked about why they campaign for Carers Week? They do it because caring is so often invisible, because it can quite often a private matter. The problem can also be a double edged sword because while its private, it can also mean carers can suffer in silence and isolation. So this year, it allows us to talk to anybody we want to really about caring, whether that’s the general public, families of friends, whether it’s employers, services and so on. So this year 2021, Carer’s UK chose the theme “visible and valued”, because last year, we said making caring visible, and carers told us we want a bit more than that. So such a theme added in.

Carer’s UK used their words and added invisible and valued this year. It has been really interesting as We’ve had a lot of engagement. Carer’s UK has done more events with employers than ever. Such events with employers and many more, but another thing is Carer’s UK had last year was tough for people because many are still getting to grips with the pandemic. So this year, there has been an increase in online activities with less being face to face.

Emily spoke about numerous wellbeing activities, which have been focused on carers, these were in terms of the politicians, where they had 66 MPs pledge support for carers week. Plus a number of MPs came to hear carer stories at one of Carers UK focus event.

  • Elinor Bradley on Royal College of psychiatrist project

Elinor attended the carers forum to speak on her latest project, she also works for Kent & Medway NHS trust, but she is representing the faculty of rehabilitation for the Royal College of psychiatrist. Elinor wanted to speak about a national issue, where she suppose it was similar to what Emily was talking about bringing the voice of carers forward. As of this moment the Royal college is sort of trying to represent the voices of carers and service users of rehabilitation services. She was sure many of those attending would know about mental health rehabilitation, but it’s really the branch of mental health services for people with complex mental health difficulties quite often psychosis. For those patients with psychosis, they have got some residual impairments, that really limit their ability to function independently. So quite often they unfortunately have had lots of repeated admissions, lots of crisis admissions, or lengthy admissions.

The royal college of psychiatrists have campaigned quite hard for the voices of people who have got complex mental health difficulties. This has sort of resulted in a new NICE guidelines, which are very sort of focused on reducing out of area care, and being focused on Person Centered Care, and also the involvement of carers and family as part of the support system.

So the RCPSYCH has done some really good work in the college, but what they are aware that they don’t really have the voices of carers or those other service users with lived experience represented on the website. So they currently engaged in a project and to collate some narratives or some stories of service users, for carers with lived experience of complex mental health.

The aim is to give those a platform nationally, so that would be on the Royal College of psychiatry website. Plus also to use experiences to work towards future campaigns and guidelines that we should be working towards. This is so that the royal college is looking for the good and the bad of supporting someone with complex mental health difficulties. This can also extend to the good and the bad of rehab services or even 136 assessments and inpatient wards as she mentioned on what David was talking about earlier on.

The aim is to raise the voices of the whole journey of supporting someone with complex mental health difficulties, so the college is looking for accounts, narratives of a range of people nationally.

This concludes June’s joint Southwark & Lambeth Mental Health carers forum.

Please check out our next set of carer group dates.

Please check out our next set of carer group dates.

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.

Greenwich Mental Health Carers forum June 2021

Here is a brief update of our Greenwich mental health carer forum for June 2021. This carer forum focuses on empowerment for mental health carer, while my Greenwich Mental Health carer peer group is on peer support and carer networking.

We were joined by MP Matthew Pennycook who is the Labour MP for Greenwich and Woolwich.

Matthew was mainly here to listen to unpaid mental health carers, which he could take up be it compliments or concerns. I could not go into any details but a few issues were raised one on the state of GP practices. We were also joined by Nosizo Magaya who is CQC’s lead inspector for Oxleas.

Matthew Pennycook MP for Greenwich

Nosizo spoke about what the CQC that being Care Quality Commission does and how they engage with NHS staff, patients and those who care for service users.

Nosizo reminded us that the CQC are a regulator, so they regulate all health services in England. She felt that perhaps the CQC could describe themselves as the Ofsted of health care. The only difference with the CQC and Ofsted is that they can prosecute, if they feel that there are providers that are not providing the adequate care.

So the CQC as an organization has got teams of inspectors that go in and review the care that’s been given to people. Sometimes they respond to whistleblowing, or any responses from any member of the public. Typically, if they do get a concern, they will contact the provider. If the person who gave the CQC the information is happy for them to share it. The CQC will contact the provider and ask for feedback and query what happened with this consent that has been raised. Their teams are a combination of different people on their health care professionals, anything from doctors to nurses, physiotherapists, and also some that are not healthcare professionals being expert by experience.

Nosizo also mentioned that they are based according to team, so the London mental health and community health service team would look after oxleas and she is the main contact for oxleas. Some queries from members were worried how long it would take to raise questions to the CQC, although another carer reminded that even if the CQC did not speak to a carer during inspection, it is always wise to raise a query off the CQC’s website.

You can check out more from the CQC off the site below.

https://www.cqc.org.uk/

SW London MH Carer Forum May 2021

Welcome to the update for May’s South West London carers forum. As with all my carer groups and forums, this is aimed at unpaid mental health carers. That being families who are caring for someone with a mental illness or mental health needs.

We were visted by Diane White who is the CEO kingston carers. This was one of the carer centre leads to engage with carers the past 3 months as Richmond, Sutton and others have been talking to carer members about each borough’s carer strategies. Not all London borough’s have carer strategies, but when they do have strategies or a focus on carers, then it means carers get a chance to see if it has made a difference in their lives. A carer strategy is also a good way to hold boroughs on their promise and committment to unpaid carers.

Diane White did not speak much regarding carer strategies since the borough of Kingston is developing their carer’s strategy as of present. Diane spoke about the support Kingston carer’s centre provides for unpaid carers. She also mentioned the challenges they have considering covid-19 and budget restrictions.

The second half of the forum was focused on important questions a carer would need to ask if the person they were looking after starts using mental health services. Most of these questions should be asked at ward rounds, care planning approaches, tribunals or carer assessments. The idea I talked to the group about such questions if for empowerment purposes, besdies such questions are provided by the Royal College Of Psychiatrists.

Patients, service users or mental health survivors should try examining such questions in preparation to ask them.

About the illness

  • What is the diagnosis or problem?
  • If a diagnosis has not yet been made, what are the possibilities?
  • Why has this happened to them?
  • Will they recover?

Why ask these questions as a carer?

When I started out as a carer, I did not understand what I was caring for. All mental health conditions affect the person differently, as someone with an eating disorder will behave differently from a person who self harms. It is very important to understand and educate what conditions you are caring for.

  1. If a diagnosis has been made
  • What symptoms suggest this diagnosis/illness?
  • What is known about the causes of this disorder/illness?
  • What is likely to happen in the future? Will it get better or worse?
  • Where can I get written information about this disorder?
  1. Why ask these questions as a carer?

Now that you might know the diagnosis, there is a chance it can help with further questions. The questions above are very good and you might not be able to ask such questions in one sitting, thats impossible, but you later on down the line you will have a chance to ask them. Out of all the questions on this blog, these ones should be the most accessible since there should be leaflets and booklets on the ward about mental health conditions. It does help if the doctor or psychiatrist explains things in more detail, especially the severity of the condition.

2 About the assessment

  • What assessments have already been done?
  • Are there any other assessments that might be needed?
  • Are there any physical problems that have been discovered? If so, what will need to be done?
  • Have culture and background been considered?

Why ask these questions as a carer?

These questions are tricky and usually not asked straight away, I think this could be due to challenge to diagnosis or to seek a second opinion. Nevertheless they are important questions, wrong assessments do happen and can ruin the life of a patient and their family. Notice one of the questions focuses on BAME aspects.

3 Care Programme Approach (CPA)

  • What is the CPA?
  • What does the CPA mean?
  • Is the person on the CPA? If not, why not?
  • Will I be involved in the CPA?
  • Looking for a counsellor?

Why ask these questions as a carer?

Vital to ask these questions, there are situations CPAs are pushed back or do not even occur. If you are lucky enough to be included in a CPA, it is a good chance to ask about them and there format. CPA’s are quite long important meetings and usually done once a year. Preparing for them is a must and certainly make sure your loved one gets a copy of their care plan otherwise there is no plan for recovery of living with the condition. If you are unlucky not to be involved in a CPA, perhaps ask if your loved one take a advocate to the meeting. The reason for this is if the person you are caring for is still quite unwell, then important questions at the CPA might be unresolved or misunderstood by the patient.

4 About care and treatment

  • What are the aims of the care and treatment?
  • What is a care co-ordinator?
  • What part will the care co-ordinator play in the person’s care?
  • Who else will be involved in the treatment?
  • What is your plan for treatment?
  • For how long will they need treatment?
  • Would talking treatments (eg, cognitive behavioural therapy, family therapy) be helpful? If so, are they available locally?
  • What happens if they refuse treatment?

Why ask these questions as a carer?

Some of these questions can actually or should be asked within a CPA metting or can be aimed at the social worker or care-coordinatator. Take note that plans for care can change down the line, so be prepared to repeat these questions in the future. Why would care and treatments change? because the condition of your loved one will change, unfortunately be prepared for worsening conditions, but it helps to be flexible even if we hope for recovery. Do also focus on physical health treatments rather than always on mental health because both are related.

5 Sharing of information

  • Have you asked them about how much information they are happy to share with me?
  • Will I be informed about important meetings concerning their care and treatment?
  • Can I see you on my own?
  • Would you like to ask me for any other information about them or the family?
  • Can I tell you things that will not be shared with the person or other members of staff?
  • Are their views on confidentiality clearly marked in their notes?

Why ask these questions as a carer?

Out of all the questions off this blog, these are the most important and if the answers are recorded then it will help you later on down the line. If the relationship with your loved one suffers “probably due to the condition” then its highly likely they do not want you involved, but it MUST be recorded why, plus mental health system need to be flexible to involve the family and carer enough or the pressure is back on services to admit the patient again and again. Please also notice mental health services MUST understand carer confidentiality since that is one of the mistakes that can cause patient to turn against their family.

6 Care and treatment

  • What can I do to help?
  • Are there any local self-help or carers’ groups that can help me understand the illness?
  • How can I get advice and training in the day-to-day management of the illness?
  • Are there any local groups that can provide support?

Why ask these questions as a carer?

If there is anything that I stand for, it is for carer networking, peer support, empowerment and carer connections. The golden rule of caring is do not cope by yourself. So it is important to link up with other carers and carer advocacy and support. Mental health services should identify you and refer to their own carer groups and others.

7 Getting help

  • How can I get in touch with you?
  • How do I arrange to see you?
  • Who do I contact if I’m worried about their behaviour?
  • What do I do if I’m worried that they are becoming ill again?
  • Who do I contact in an emergency? What help might be available?
  • How can I get a second opinion?

Why ask these questions as a carer?

These questions are useful for emergencies as well, as with a triangle it is important carers do not get locked out of contact, one of the many criticisms of mental health services is lack of communication and lack of contact, especially when things begin to fall apart. Get the answers and record them down or you will be lost.

8 Carers

  • What is the difference between a carer, a nearest relative and a nominated person?
  • I understand that, as a carer, I am entitled to an assessment and care plan of my own. Who should I speak to?
  • If I have specific needs of my own, who should I ask?
  • If I need help, to whom should I turn?

Why ask these questions as a carer?

When I started out caring, I did not even know I was a carer, nothing wrong in that, except you lose out on carer support. Many people are not fond of the word carer and will prefer supporter, friend or other named definitions, but as it stands there are laws to protect unpaid carers like the “Care Act 2014”. It is unwise to avoid asking such questions because looking at the page of questions alone will leave you lost. Get that carer’s assessment, because it will record your circumstances and protect your rights if things go wrong, do not think you obligated to care, but certainly protect your rights as a carer.

9 Medication

  • What medication is to be used, and how?
  • Is the lowest effective dose being prescribed?
  • Can a low dose be taken at first and increased if necessary?
  • How often will the medication be reviewed?
  • Will I be involved in future discussions about the dose or type of medication?
  • What should the benefits of this medication be?
  • In the short term.
  • In the long term.
  • What are the possible side-effects of this medication?
  • In the short term.
  • In the long term.

Why ask these questions as a carer?

I think these questions are the ‘elephant in the room’ so much boils down to how medication helps with recovery or the ability to cope. The wrong medication and mess up your loved ones life and I will cover this later, even with good medication certainly expect side effects. Ask about side effects now, so you know what to look for and do not expect your loved one to suss out what is always going on.

10 Managing the medication

  • Why have you chosen this particular medication?
  • How long will the medication have to be taken for?
  • Are there any other medications that could be used if this one does not work?
  • What symptoms might mean that the dose should be changed?
  • What should I do if they experience unpleasant side-effects?
  • What will happen if they stop taking the medication?
  • Do you have any written information about this medication to give me?

Why ask these questions as a carer?

Not all medications are alike in ability and quality. It is your right as a carer to challenge medication if you suspect they are going to cause more problems than the condition itself. Certainly explain to your loved one the importance of understanding medication, but there will be times you might have to take a step back and ask services to help out or explain about medication. These questions should hold them to account on their decisions.

11 Hospital treatment

  • Do they need to be admitted to hospital? If so, for how long?
  • If they have to go into hospital, which one will it be?
  • Will they be on a locked ward?
  • If they get short-term leave from hospital, when and how will I be informed?
  • How often will I be able to see them?

Why ask these questions as a carer?

These questions might come after an assessment, especially if the family insisted on a mental health assessment. There is nothing worse than having a loved one admitted and not knowning what is going on. Please ask these questions if the person you care for is due to be admitted.

12 Discharge from hospital

  • What arrangements will be made for their care and monitoring after discharge from hospital?
  • If I am not able to look after the person when they are discharged, what will happen?
  • Am I expected to help with anything, especially medication?
  • Do you know of any self-help techniques that will help their recovery?

Why ask these questions as a carer?

What is worse than being admitted without much notice is when a loved one is discharged and you do not know about it, especially if they are still quite unwell. So asking such questions should involve you in discharge so they dont end up on the ward in a hurry again.