Tag Archives: Lewisham

South London Mental Health Carers Forum Update – July 2026

By Matthew McKenzie – Chair of the South London MH carers forum

Another month has passed, and I would like to thank everyone who joined our South London Mental Health Carers Forum. It was fantastic to welcome carers, NHS professionals, voluntary sector organisations and local authority representatives from across South London to discuss issues affecting unpaid mental health carers.

As always, the forum provides a safe place where carers can raise concerns directly with decision makers, hear about new developments, share experiences and help shape improvements across mental health services.

For those who were unable to attend, here is a detailed summary of the meeting.

Welcome and introductions

We welcomed carers from across Lewisham, Lambeth, Southwark, Croydon, Richmond and surrounding boroughs, alongside representatives from:

  • Lewisham GP Mental Health Transformation
  • Carers First Croydon
  • Carers Hub Lambeth
  • POWHER (NHS complaints advocacy)
  • Southwark Council
  • Carers with lived experience
  • Voluntary sector organisations

The strength of the forum continues to be its mix of lived experience alongside professionals willing to listen directly to carers.

One particularly encouraging update at the beginning of the meeting was confirmation that South London and Maudsley NHS Foundation Trust (SLaM) is reviewing its Triangle of Care work and wishes to involve carers more closely in that process.

This is extremely important because Triangle of Care is one of the main national frameworks that helps mental health services work better with families and unpaid carers.

Lewisham Mental Health Transformation Update

Our first guest speaker was Dr Anna Robinson, GP Clinical Lead for Mental Health Transformation in Lewisham.

Dr Robinson explained that one of her main priorities is improving communication between GP practices and specialist mental health services. She recognised that many of the difficulties experienced by carers occur during transitions, particularly when someone moves between primary care and secondary mental health services. To help address this, she has already begun bringing together GP leaders and mental health professionals, creating opportunities for closer collaboration and establishing direct communication channels, including a new WhatsApp group linking GPs with mental health clinicians so concerns can be discussed more rapidly. She hopes these improvements will lead to better referral pathways, clearer discharge arrangements and more consistent communication between services.

Improving communication between GPs and mental health services

One of the biggest priorities is improving communication between GP practices and specialist mental health services.

Many carers know only too well how stressful it can be when someone is discharged from secondary mental health care back to their GP.

Communication delays often create uncertainty about:

  • medication
  • follow-up care
  • relapse planning
  • physical health monitoring
  • who is actually responsible for ongoing care

To improve this, Lewisham has already begun bringing together GPs and mental health clinicians, including establishing direct communication channels so problems can be discussed much more quickly.

This was welcomed by carers, although many explained there remains considerable work to do.

Carers’ biggest concern: discharge back to GPs

This became the largest discussion of the afternoon.

Many carers expressed anxiety about people with severe mental illness being discharged from community mental health teams back to primary care.

Some of the concerns raised included:

  • GPs may not know the patient as well as specialist teams.
  • Carers worry relapses may not be identified quickly enough.
  • Missed appointments are sometimes an early warning sign rather than a sign that someone is well.
  • Some medications require specialist monitoring.
  • Communication between services is still inconsistent.

One carer explained that if someone experiencing psychosis fails to attend appointments, it should trigger concern rather than assumptions that everything is fine.

Another highlighted that patients can sometimes cancel appointments themselves, meaning clinicians may never realise there is actually a developing crisis.

Dr Robinson acknowledged these concerns and confirmed they are exactly the type of issues she wishes to improve through stronger collaboration between GP practices and specialist services.

Early identification of mental illness in schools

Another important discussion focused on children and young people.

One parent shared how concerns about their child’s mental health had been dismissed at school months before a serious psychotic episode eventually occurred.

This led to discussion about whether all school staff should receive training to recognise early signs of serious mental illness as part of safeguarding training.

Dr Robinson explained that Lewisham is expanding mental health support teams in schools and is also developing alternative services for young people because traditional CAMHS services remain under enormous pressure.

The discussion highlighted how earlier recognition may prevent future crises for some young people.

Universal Care Plans and identifying carers

During the discussion I raised the growing use of the Universal Care Plan (UCP) across London.

One area we discussed was whether GP surgeries are identifying unpaid carers more effectively.

Many carers are still not recorded as carers within GP systems, meaning they may miss out on:

  • health checks
  • vaccinations
  • support services
  • referrals
  • carers’ information

Dr Robinson confirmed GP systems can record carers through coding, but acknowledged this often depends upon carers identifying themselves.

This remains an important challenge because many people caring for relatives still do not think of themselves as “carers.”

Better identification continues to be essential if carers are to receive the support they deserve.

The discussion also broadened into medication safety, the role of GPs in supporting people with long-term mental health conditions and the identification of unpaid carers within GP practices. A carer shared her own lived experience of being misdiagnosed and suffering severe adverse reactions to medication before eventually receiving the correct diagnosis and treatment. Dr Robinson acknowledged that medication can sometimes initially worsen symptoms and stressed the importance of clinicians discussing potential side effects openly with patients.

As I raised questions about the rollout of Universal Care Plans and whether GP surgeries are preparing to identify carers more effectively through SNOMED coding and improved care planning. Dr Robinson explained that GP systems can record carers, although this often depends upon carers identifying themselves, and recognised that many people providing substantial care still do not see themselves as carers. The discussion reinforced the importance of improving carer identification, strengthening communication between services and ensuring carers are recognised as genuine partners in care rather than remaining invisible within the healthcare system

Carers First Croydon

Our second presentation came from Carers First, the organisation delivering carers’ services across Croydon.

Jessica and Toby introduced their service and explained how they are developing support specifically for unpaid carers, including those caring for someone with mental illness.

Although their service supports all carers, they recognised that mental health carers often experience unique challenges.

These include:

  • confidentiality barriers
  • crisis situations
  • unpredictable relapses
  • emotional exhaustion
  • isolation
  • uncertainty around care planning

Their presentation showed a genuine understanding of the pressures faced by mental health carers.

I agree. For a blog, that section reads more like meeting notes than an article. Here’s a much smoother narrative version that still captures the main points without relying on long bullet lists.

Carers First Croydon: Supporting Carers Before Crisis

The organisation commissioned by Croydon Council to provide support for unpaid carers across the borough. Jessica and Toby introduced the service and explained how they are working to ensure carers receive support much earlier in their caring journey, rather than only when they reach crisis point. Although the organisation supports carers of all ages and caring situations, they recognised that those caring for someone with mental ill health often face unique challenges, including emotional exhaustion, confidentiality issues, unpredictable relapses and the constant uncertainty that can accompany serious mental illness.

A key message throughout the presentation was that support for carers needs to be holistic. Carers First offers statutory carers assessments, practical advice, emotional support, peer support and wellbeing activities, but these conversations extend far beyond simply discussing the caring role. Staff work with carers to understand the wider impact that caring has on everyday life, including issues such as employment, finances, poor sleep, housing difficulties, physical health and emotional wellbeing. The aim is to identify the pressures that make caring more difficult and then work alongside carers to find practical solutions, whether through grants, referrals to other organisations, respite opportunities or local wellbeing services.

The presenters emphasised that many carers wait too long before asking for help, often believing they should simply cope on their own. By the time support is requested, carers may already be physically and emotionally exhausted. Carers First hopes to change this by encouraging earlier referrals from GPs, mental health services and carers themselves, allowing support to be put in place before problems become overwhelming. The earlier carers receive advice and practical assistance, the more likely they are to maintain both their own wellbeing and their ability to continue caring.

There was also a strong focus on carers’ own health and wellbeing. The presenters spoke about activities such as carers cafés, Qigong sessions, volunteering opportunities and wellbeing programmes, not simply as recreational activities, but as an essential part of sustaining carers over the long term. One particularly powerful message from the presentation was that self-care should never be viewed as a luxury or something to feel guilty about. Instead, looking after carers is fundamental to maintaining safe, sustainable caring relationships. By supporting carers emotionally, socially and practically, organisations like Carers First help ensure that carers themselves remain healthy enough to continue supporting the people who rely upon them.

Southwark Council Engagement: Safeguarding Review

Later in the meeting we welcomed representatives from Southwark Council, who attended to discuss the council’s current review of safeguarding arrangements and, importantly, to hear directly from carers about their experiences. The discussion recognised that safeguarding is not simply about responding to abuse or neglect, but about ensuring that people with mental health needs receive safe, person-centred care while families and carers are appropriately involved throughout the process.

The review aims to strengthen safeguarding by making it:

  • More consistent across services.
  • More proportionate to individual circumstances.
  • More person-centred and focused on outcomes.
  • Better at involving families and carers where appropriate.
  • More responsive to concerns raised by people with lived experience.

Council representatives emphasised that this was not simply a consultation exercise but an opportunity for carers to genuinely influence how safeguarding develops in Southwark. Those attending the forum were encouraged to continue sharing their experiences so that future improvements are informed by the realities of supporting someone with mental illness.

Questions and discussion

The discussion that followed highlighted a number of recurring themes experienced by carers across South London.

Several carers explained that they often recognise subtle changes in a person’s behaviour weeks before professionals become aware that something is wrong. As the people who know their relative best, carers felt that their observations should be taken more seriously when concerns are first raised, particularly where there is evidence of deteriorating mental health or increasing risks.

Questions were also raised around how safeguarding concerns are assessed and whether professionals always communicate effectively with families once a concern has been reported. Some carers described occasions where they were uncertain about what action had been taken, what the next steps were, or whether their concerns had been fully understood.

There was also discussion about balancing confidentiality with safeguarding responsibilities. Whilst recognising the importance of protecting an individual’s rights, carers emphasised that excluding families from conversations can sometimes mean valuable information about risks, changes in behaviour or previous crises is overlooked. Many felt that better communication with carers could strengthen safeguarding rather than compromise it.

Another important point raised was that safeguarding should not only focus on responding after a crisis has occurred. Instead, carers felt services should recognise early warning signs, intervene sooner where possible and view carers as partners in identifying emerging risks before situations escalate.

The representatives welcomed these reflections and acknowledged the value of hearing directly from lived experience. They encouraged carers to continue engaging with the review process so that future safeguarding arrangements better reflect the realities faced by families supporting someone with serious mental illness.

Lambeth Update

We were also pleased to receive an update from Karen Ibrahim, Mental Health Carers Coordinator at Carers Hub Lambeth, who shared a number of developments taking place across the borough to improve support for unpaid carers.

Karen explained that Carers Hub continues to expand its offer to carers, with several new initiatives now available. One of the most significant developments is the introduction of the Lambeth Carers Card, which is intended to help carers identify themselves more easily when accessing services and encourage wider recognition of the vital role unpaid carers play. Alongside this, Carers Hub has strengthened its welfare benefits support, enabling carers to access specialist advice on benefits, financial entitlements and income maximisation, an increasingly important service given the financial pressures many carers continue to face.

Another important area of work has been raising awareness of carers throughout local services. Karen described the continued delivery of carers awareness training for professionals, helping frontline staff better understand carers’ rights, the challenges families experience and why carers should be recognised as partners in care rather than simply relatives accompanying patients. She also highlighted the ongoing development of the Lambeth Mental Health Carers Group, which continues to provide carers with opportunities to share experiences, influence local services and receive peer support from others who understand the realities of caring for someone living with mental illness.

Questions and discussion

The discussion then moved towards some of the more difficult experiences carers continue to face within inpatient mental health services.

One issue raised was the safety of inpatient wards, with concerns expressed about incidents involving patient-on-patient violence and the emotional impact these situations can have on both patients and their families. Carers discussed the importance of ensuring that safety concerns are taken seriously and that families are kept appropriately informed when incidents occur.

Questions were also asked about how carers’ concerns are escalated when they believe someone is at risk or when communication between staff and families begins to break down. Karen acknowledged that these situations can be extremely distressing for carers and stressed the importance of maintaining open communication between inpatient teams, community services and families wherever possible.

The discussion also reinforced the wider importance of involving carers throughout a person’s mental health journey, rather than only contacting families during periods of crisis. Participants agreed that carers often hold valuable knowledge about changes in behaviour, early warning signs and previous experiences of relapse, and that this lived experience should be recognised as an important contribution to safe and effective care.

Karen thanked carers for continuing to share their experiences and encouraged everyone to remain engaged with Carers Hub Lambeth, emphasising that feedback from carers plays a vital role in helping improve local mental health services and ensuring carers’ voices continue to influence future developments.

Looking ahead

Our forum will continue bringing together carers, NHS services, local authorities and voluntary organisations to improve mental health support across South London.

If you are an unpaid mental health carer living in South London, you are always welcome to join us.

Together we can continue raising carers’ voices, influencing services and helping ensure that carers are recognised not simply as visitors to mental health services, but as valued partners in care.

Lewisham, Southwark & Lambeth carer forum update October 2025

The recent Carers Forum brought together unpaid carers, health professionals, and community organisations from across South London to share updates, experiences, and ideas for improving mental health support. The event, chaired by Matthew McKenzie, created a safe and open space for carers to connect, exchange information, and have their questions heard by local health leaders.

Setting the Scene

Matthew opened the session by welcoming carers from across Lambeth, Lewisham, and Southwark. He spoke about the importance of providing carers with dedicated time to hear from service providers, particularly those supporting someone with mental ill-health and to ensure their voices shape local mental health strategies.

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SIPS for Carers – Peer group engagement event in Lewisham

On December 14th, a carer engagement peer event took place at Sydenham’s Ignition Brewery, creating a vibrant and inclusive space for unpaid carers in Lewisham to connect and share experiences. The event, which was carer-led, was hosted by Wendy, who is passionate about strengthening the network of support for carers in the borough. Wendy was joined by her son Jamie who as a young carer was awarded “Young Resident of the Year” in 2022 by Lewisham Homes.

The gathering named Sydenham’s Ignition Peer Support “SIPS FOR CARERS” provided an opportunity for carers to engage in meaningful conversations.

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Lewisham Mental Health carer forum – November 2024 update

Welcome to a brief update of my Lewisham mental health carer forum aimed at those caring for someone living with mental illness.

The carer group discussed the importance of involving carers in the planning and improvement of services, with a focus on creating a carer family involvement network and improving carer information. They also addressed concerns about the lack of involvement of black carers in Council initiatives and the need for better communication and support for carers. The conversation ended with discussions on effective communication in caregiving for mental health, the importance of self-care for carers, and the need for professional help when communication breaks down.

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Lewisham Mental Health carer forum – October 2024 update

Welcome to a brief update of my Lewisham mental health carer forum aimed at those caring for someone living with mental illness.

Forum update for October

Matthew Mckenzie led a meeting for mental health carers, introducing new members and discussing essential questions for service users’ care and treatment. The group explored various aspects of mental health care, including diagnosis, treatment plans, medication, legal rights, and the importance of carer involvement in the recovery process. The conversation ended with a presentation on the challenges faced by unpaid carers and a discussion on the importance of peer support and knowledge empowerment for carers navigating the mental health system.

Mental Health Carer Group Organizing

Matthew Mckenzie, who has lived experience of being a mental health carer was the group organizer. He led a meeting with various carers and professionals. Matthew introduced himself and his various groups, including one for South West London.

He also mentioned his carer website and the previous meeting’s link. Matthew then proceeded with introductions from various attendees who also are unpaid carers. Matthew then introduced Nadine, the new Lewisham Mental Health Carer’s social worker, who shared her role and responsibilities. The conversation ended with Matthew planning to present on what carers need to prepare for if they’re going to end up in a role with mental ill health.

Carer Support Worker’s Role and Plans

In the meeting, Nadine Denniss-Baker discussed her role as the new Lewisham carer’s support worker, emphasizing her commitment to understanding and addressing the needs of carers. She highlighted her involvement in various groups, including a carer’s group and carer’s champions meetings, and her plans to update and expand these initiatives. Nadine also shared her personal experiences as a carer and her professional background as an approved mental health professional. She discussed the importance of transparency and the need for better communication and collaboration between different organizations and groups. Also discussed was the potential for Nadine to attend national meetings and share best practices with other trusts. The conversation ended with a discussion on the importance of sharing good practice documents and resources to support carers and staff.

Introducing New Members and Questions

Matthew led a meeting where he introduced two new carer members group. Matthew then presented a list of essential questions for carers to ask regarding service users’ care and treatment, which he plans to blog about in the future. He also mentioned that he would record the meeting for those who couldn’t attend. The meeting was part of a carer’s forum, and Matthew emphasized the importance of carers being aware of these questions to better support their loved ones using mental health services.

Understanding Mental Health Diagnosis and Treatment

Matthew discussed the importance of understanding the diagnosis and treatment plan for a loved one’s mental health. He emphasized the need to ask about the current diagnosis, treatment plan, and the effectiveness of the treatment. Matthew also highlighted the importance of monitoring side effects and the potential for medication adjustments. He stressed the need for carers to engage with the multidisciplinary team, including primary contacts, and to inquire about the roles of specialists like occupational therapists. Matthew also mentioned the importance of understanding the medication’s purpose, dose, and potential side effects, and the need to clarify with the loved one if they can refuse medication. He concluded by emphasizing the importance of education regarding medication and mental health

Discussing Relapse and Care Plans

Matthew also highlighted the importance of asking about signs of relapse and what to do in emergencies, as these should be included in the care plan. Another member of the carer group, Faith mentioned a carer’s emergency card discussed at a recent forum, which Matthew agreed was a valuable tool. The group agreed on the need for a two-way conversation about relapse signs and for these to be recorded for quicker response times.

Carer Awareness, Training, and Rights

Matthew emphasized the importance of carer awareness and training, urging carers to ask questions and seek clarification when necessary. He also highlighted the need for carers to know their rights and how to make complaints if they’re not satisfied with the care provided. A carer suggested adding a section on how to make a complaint, which Matthew agreed to include in his future lectures. A carer stressed the importance of knowing the names of the care team and their managers to ensure effective communication and support. Matthew concluded by discussing the need for carers to understand what information can be shared with them, and the importance of obtaining consent from their loved ones to be involved in their care.

Involving Carers in Recovery Plans

Matthew discussed the importance of involving carers in the recovery plan of their loved ones, especially when they are living with them. He emphasized the need for a comprehensive care plan, which should be shared with the carer and the service user. Matthew also highlighted the importance of establishing specific goals for the service user’s mental health and social well-being. He suggested asking essential questions about the discharge plan, support after discharge, and the involvement of the community mental health team. Matthew also stressed the need for carers to understand the goals set for the service user’s recovery and to ask for practical advice on how to support their loved one. He concluded by mentioning the need for carers to know the roles and responsibilities of the care coordinator and other team members.

Challenges of Unpaid Carers in Borough

In the meeting, Matthew presented a detailed account of the challenges faced by unpaid carers in the borough, highlighting the what type of support and resources available to them. Carers discussed the need for better advertising and involvement of carers in services. A carer raised a question about encouraging carers to be more involved in services, to which Matthew responded that it’s a challenge due to the carers’ heavy workload. Matthew agreed to share his presentation in PDF format and to write a blog on the topic. Several carers expressed appreciation for Matthew’s presentation, noting that it provided a clear guide for navigating the complex network of resources and services.

Challenges of Carers and Peer Support

The carer group discussed the challenges faced by carers and the importance of peer support. A carer shared their experience of dealing with the mental health system, highlighting the lack of support and the invisibility of carers. Matthew emphasized the need for carers to be equipped with knowledge to ask specific questions during meetings to avoid being lost in the system. A carer asked another member about her experience of caring for her loved one regarding psychosis, and the carer responded by shared her journey, highlighting the importance of peer support and retaining hope. Matthew ended the conversation by encouraging the use of triangle of care and inviting everyone to attend future meetings.

Carer poems – Carers Lewisham culture day 2022

Hello visitors and those providing care or caregiving to someone close. Here is another carer awareness blog from Matthew Mckenzie, carer activist, poet and author from Lewisham.

This blog is about Carers Lewisham Hub’s culture day. Carer centres are a vital part of providing support and services for those giving unpaid care. Carers Lewisham fights hard to identify carers, advocate for them and give as much support as possible.

I often visit the carers centre for their forums and support groups. On the 28th of July 2022, since the borough of Lewisham was the borough of culture. Carers Lewisham was hosting their culture day at their carers centre. A list of activities, networking and events was provided for carers who wanted to feel valued.

We had the game room and Raffle ticket event. Massage for those who have stress, aches and pains. Creative art sessions for those wanting to be……well creative. We also had laughter workshop, book readings and also my poetry reading (more on that later.)

I think most of all, carers who came along to the event wanted to network with others. They wanted to reduce isolation and link up with carers, staff and advocate to get support, information and to feel valued.

Since my poetry book “The Poetry book of mental health caring” was released in July 2022. Carers Lewisham was kind enough to offer me a poetry workshop. It is well known that over time, poetry can contribute to forms of culture. Most if not all my poems focus on the aspect of the caring experience. The poems look to raise the awareness of those providing mental health care. That means providing unpaid care to someone suffering mental illness.

At the book reading and poetry workshop, we had other carers reading from their poems which they have developed. Tess read a wonderful poem and also Brenda.

I ran my workshop by reading a poem and then asking others to also choose a poem to read. We then reflected on the meaning and definitions of those poems. You can see the video of my poetry workshop below.

New book titles for 2023 by Matthew McKenzie

Hello, everyone!! Merry Christmas thanks for joining me here today to explain a bit more about future projects that I’m going to be working on. Some of them actually, almost practically finished. So yep, my name. As you can see from the title here, my name is Matthew McKenzie, Carer campaigner, Mental health carer activist who facilitates several carer groups around half of London.

what I want to do is just explain a few things regarding some books that I’m working on. I’m going to start developing audiobooks, I will of course continue to work on paperbacks, one of them is in draft at the moment. I’ll talk about that in a bit.

If you want to see the video version of this blog, please watch below.

Special edition of my poetry Audio book – The Poetry book of mental health caring

So during summer 2022, I published my first poetry book. This was my first attempt at what I felt would be focusing on the experiences of providing mental health care. One of the reasons of doing poetry is that you don’t have to really read a whole book to just sort of reach out to those who perhaps understand, in a sense of what’s it like to provide care for someone with mental ill health. Plus to also reach out to those who’ve never experienced it.

So I’m doing an audiobook project on my poetry, but with the added benefit of contributions from other carers who are activists or are poets who want to produce poetry on the carers experiences. So I’m hoping to publish in early 2023, January, February, by that time, that audiobook will be coming out.

Race, caring and mental health

The next book, which is not an audio book, will be in paperback form. I felt it was due time to come out. This is because I have been writing books close to two years now. I have also been running as carer groups, but two of them focus on ethnic carers coming from ethnic minority background, so obviously, they are providing care and support to someone experiencing some form of mental illness.

I’ve been meaning to develop a book like this for some time looking at how mental illness can impact on the family, on friends, not from the patient side. Let’s look at this new book closely. The book titled “Race, Caring and Mental Health”. From it’s first chapter, I often say to many people that it’s important to tell your story. With this book, I felt it even more important due to some of the tragic consequences that can happen to ethnic minority groups providing unpaid care. This is it’s not just within the mental health system as the book’s second chapter will be looking at discrimination and racism, and links to mental health, for the other chapters, they will focus on health inequalities and the structures. The book will explore the deadly roundabout regarding the repeat situations of those going in and out of the mental health system. Why does this occur?

I don’t have the answers and can only share my ideas of what I’ve seen and what I’ve heard, but I know what I’m learning about. I’d be really interested on people’s views of my new book, which is in draft form at the moment and I will probably change a couple of pages in the hope to release this around January 2023.

Providng Care and other Short Stories

Lastly my 6th piece of work will be an audiobook, similar to the project of the poetry audiobook. But this time I want to work towards fiction. Now, I’ve been writing two years now. Most of the books that I’ve been doing are not fiction at all. I mean, I suppose you could argue in some sense that poetry is looking at certain topics that may or may not happen. So this new audiobook will be my first attempt at fiction, including 20 short stories about unpaid care, here are some of the stories below.

This audio book will explore some of the following carer themes.

  1. Providing Care
    Story about a woman finding out her husband has developed a form of mental illness, she now has to battle to become an unpaid carer.
  2. Digging out of a hole
    A young man caring for his sister, but this time there are horrible things that make his life difficult.
  3. A family Affair
    Story of a main carer feeling isolated by the family, everything is thrown at her and no one wants to help.
  4. Never thought it would be me
    A female carer whose partner is caught in a serious accident, her life is turned upside down as she battles to provide care for him.
  5. Angry
    A carer thrown into anger and despair as she is let down time and time again, leading her to becoming angry.
  6. Just when I needed you
    A story of carer peer support and why it is needed, a story that is more hopeful than previous stories.

Anyway, thanks for stopping by. Hope you have a lovely holiday break.

Lewisham Mental Health Carers forum October 2022

Hello fellow mental health carers and readers, been a while since I have been blogging due to working on my new book called “Race, caring and mental health”. This book will be my 2nd release for 2022, the book will reflect how mental illness impacts on carers from ethnic minorities especially black people. I hope to get that book out for November 2022.

Going away from promoting my new book, this is just a quick blog for my Lewisham mental health carers forum. A forum aimed at those caring for someone suffering mental illness.

The speakers for October 2022

Marie Cooper RGN BSc MSc (Florence Nightingale Foundation) – Pallative care “walking the walk”
Evelyn Sample (South London & Maudsley NHS Trust) – Approved Mental Health Professional / Mental Health Act presentation

  • Marie Cooper presents on Palliative and End of Life Care

Marie Cooper who is also the Project Lead for Palliative Care Nursing at St Christopher’s wanted to understand the experience of the carer when its come them supporting a loved one coming to the end of their life. Marie mentioned when it reaches that stage, the term for that person becomes more personal as they see themselves more than just carer. They are perhaps a family member, a loved one, anybody of importance to that person.

Marie mentioned it is really important to hear the voice of the relative or person experiencing their loved ones end of life care. Marie started off by showing a few pictures of hospital rooms.

In her talk it was stated that in hospitals, where someone was visiting a loved one or someone who had died. The experience of walking through the hospital or the bereavement suite makes a big difference in someone life, this will stay with them forever. So the project Marie mentioned was “Walking the walk” as Marie and her colleagues would become the carer as they walk through the wards. They travel right through the hospital into understand the entrance, the experience of what that family might be going through as they visit a loved one who has died. Marie focuses on emotions of that time, some people are rushing to get to where their loved ones are, or the people being there for days waiting and attending to their loved one and what support is there for them.

The overall aim of the project is to improve the experience for the family and the friends, anybody. What they did was they worked with 25 hospitals, those being 25 acute trusts over the past and pre COVID period. They have just done the Evelina hospital for Children with parents, which has been a very powerful experience. That hospital is formed from Guys and St Thomas NHS FT.

As mentioned in her talk, Marie literally walks through the hospital, they do the walking, and this would be a team of four of them. They would visit all the public sites, look at the toilets, look at the phones, look at the cafeteria. They would take photographs and eventually they report back to the hospital to get feedback on improvements. In the end it just gives them a chance to speak to the nurses, the doctors on what their experience of people coming to the hospital in their last days? What’s working well, what would they like to see different.

Marie and her work partners look at four areas, they look at the environment to practical facilities, is it clean? Is it comfortable? Is it hostile? Is it something that they would want to sit in which is accessible? They also talk to families to get their experience e.g. caring for my loved one for many years? Can they still care for them? How much can they be involved in the care of their loved one? Then thirdly, what support is there for that person? Have they got Wi Fi access at that hospital site? Can they get access to food? Can they park? Can they shower? Can somebody be their key person? tell them what’s going on so they can support their loved one? Plus what about the care after death? What care is there for the person after that loved ones dying. So they look at all those four elements as they traveled through the hospitals.

Marie should has a picture slide of waiting rooms at a children’s hospital. The experiences when children die, the memories and all the incredible work in children’s hospitals and hospices around trying to contain those lost memories, and about how to show a child are still being cared for after their passing, through the use of fabrics and cots and other furniture. So that in keeping the personhood of that deceased person relevant and respected that the family might be find helpful and comforting in future.

QUESTIONS FROM CARER MEMBERS

Is there capacity for cultural improvement for the experience of pallative care regarding ethnic minority carers.

Do You get any push back from Chaplin services as hospitals?

I run a carer stall at several hospitals, What can you say to someone who’s going through a difficult time when their loved one has died or is dying?

How can mental health trusts take on the programme? People do not die as in a planned state, but pallative care is a concern due to sudden death or complications from mental and physical health.

One person mentioned that their are two end of life care situations that comes around in different ways. For some people it’s planned that they’re goning to die. Often in certainly adult mental health services, we don’t always know when people are going to die. It is usually quite traumatic and when they do die, either through suicide or premature death, because they’re physically unwell, we are not sure if we have a sort of clear cut response. Often, there’s lots of practical things that we might help families after, but from the presentation there are a lot of things to query.

It was raised that the way carers centers respond to end of life, is that they would not normally stop someone’s membership when they cease to become a carer. Because they know that that’s a really difficult time, and they’re going to need help, sometimes they might keep them for like 18 months after to help them, especially if their caring role has been their full time job and their identity, they would help them sort of replace it with other things, volunteering, getting back to work, that sort of thing. It would be bad pratice to tick a carer off membership if their loved one passed away, but then it is also a decision for the carer.

Are pallative care policies updated at mental health trusts compared to accute trusts?

One person responded I don’t think or I’m not aware that we do have a brief new policy, we have a certain minimum as unfortunately and tragically, a very high disproportion of our service users die prematurely. The experience and impact of death has a huge strain and trauma on the carers health.

As in the past there are a number of our service users who commit suicide and when there is an incident then there is an investigation process that goes into reviewing the care that was provided to that individual.

  • Evelyn Sample presents on the mental health act

Evelyn looked into the role of the nearest relative under the Mental Health Act and how it’s changing in the coming years. She is aware for a lot of carers that the Mental Health Act and the functions of the nearest relative are quite confusing. So she thought that she would talk to us about what the nearest relative rules are and why some people are nominated as the nearest relative. Plus how and what are the rights and responsibilities of the nearest relative and how that might be changing.

Evelyn reminded us that she is a mental health social worker, which means she is an “Approved Mental Health Professional (AMHP)”. Now the approved mental health professional historically has been as A role that was exclusively for social workers. Since 2008, it has been possible for non social workers, nurses, occupational therapists, psychologists to have that role.

Evelyn feels what is really important is that people have information about the role of the nearest relative, because what happens as an AMHP is that you are assessing someone under the Mental Health Act, either you’re planning an assessment that’s going to take place in the community or you’ve been asked to assess someone who’s already an inpatient in the mental ward. This could be because they have come in as an informal inpatient, and they are now having a mental health assessment on the ward.

The function of the nearest relative is to provide a safeguard under the mental health act. So in order to ensure that people have person/patient interests and also they have the person’s well-being considered. The nearest relative has an important role other than the doctors who are involved in making recommendations for detention, or the amp who is employed by the local authority to also act as a safeguard.

The idea is that the nearest relative is intended to be the person who is thought to be closest to the patient, and who therefore knows them best, and is able to, to act in their best interest.

When the Mental Health Act was originally devised in the early 80s (1983), the current Mental Health Act, used as a sort of table for identifying new relatives. That table now seems quite outdated so therefore there was a proposal to change the act so that people can actually choose the nearest relative. Evelyn mentioned they have a system where the nearest relative ( Section 26 of the act). says if you are the husband or wife or civil partner of a person, then generally you will be the nearest relative. Then the table goes on from there.

Husband, wife or civil partner
Son or daughter
Father or mother
Brother or sister
Grandparent
Grandchild
Uncle or aunt
Nephew or niece

The issue is that it is a rigid order that is set out in the law that determines who is the nearest relative? And currently, the amp and the patient have little to no say over that.

The proposal is that under the Under the new Mental Health Act that’s coming in; Mental Health patients in advance of mental health assessments, when they have “capacity” to do so will be able to nominate their OWN nearest relative and choose the person that they think will best reflect their their wishes, and will act in their interests.

So this change is going to be significant in the legal situation, assuming that the The bill has not yet gone through Parliament, which is about increasing the patient’s choice, and enabling patients to be more involved in the decisions around there care and treatment.

QUESTIONS AND STATEMENTS FROM MEMBERS

Sometimes the nearest relative is usually the carer or friend. So when it comes to the nearest relative, could it not be changed to “The nearest relative or carer?”. Because sometimes the nearest relative might be 100 miles away.

Can the nearest relative refuse because of bad history with their parents, whether they’d been abused and they just they just basically have cut links can they refuse if they were contacted?

Do you have any like sort of queries or concerns regarding the new changes to the mental health act? and the second question on is there like a list somewhere on like the duties an AMHP that could be tailored to how they deal with unpaid carers?

Lewisham Carers Hub – Carers forum relaunch

Welcome to an update from my unpaid carers blog. Recently I attended Lewisham Carers Hub event. They are relaunching their carers forum, which is a great way for unpaid carers to connect, network and voice their feedback.

Lewisham Carers Hub provides a range of services including advice, information, emotional support, short breaks, opportunities to meet other carers to reduce isolation and build resilience.

The event was chaired by Sue Stockman – Director of carers services. Sue listened to carers carefully and responded very well to queries and concerns. With the relaunch of the carers forum, Carers Hub Lewisham wants to be more inclusive and give carers a chance to co-chair the meeting.

I was excited to hear about work to promote a carer’s charter developed in conjunction with unpaid carers. A carer’s charter helps carers and others know about carers rights. I also learned about IT development support for carers struggling with digital literacy and upcoming services at the carers centre including carers counselling service, health and wellbeing activities and cost of living workshops.

At the forum was Tristan Brice from Lewisham council. Lewisham council wants carers to feed back on recommissioning and also wants to hear from carers about carer identification, carer assessments and other things.

Lewisham Carers Hub are also going through a rebranding process and I have included part of the branding below. There will be more to come.

In the end I thought that well attended with many carers contributing their thoughts and suggestions. I feel having a carers forum shows how a carers centre can give carers a voice and a say on what helps them overall. So even though it is early days, we can see how the carers forum develops.

Lewisham Mental Health Carers forum November 2021

Carers Lewisham

Welcome to a brief november 2021 update for my Lewisham mental health carers forum. The forum is an online forum and provides engagement for those caring for someone suffering mental illness. The speakers for November 2021

Li-ying Huang – South London & maudsley Pharmacist
Raymond McGrath – Lead Nurse : Integrating our Mental and Physical Healthcare Systems (IMPHS) for Mind & Body Programme

Li-Ying Haung presents on the importance of medication.

As we all known medication and mental health can go hand in hand, there are times when patients struggle with medication and unpaid families and carers feel there is a lack of information and engagement regarding medication.

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