Carers Rights Day 2021

Welcome to another blog by former mental health carer Matthew Mckenzie. I run many carer forums and support groups for half of London aimed at those caring for someone suffering mental ill health.

I am also an author of the books A Caring Mind and my newly released book “Experiencing mental health caregiving – unpaid carers”. I do not often do videos that much, because I am so busy writing something, but did you know Novemember the 25th is Carers rights day?

For the video version of this blog, please watch below.

Well before I talk more about that, lets understand what a carer is first. When I say carer, I often mean unpaid carers and of course caring for someone you love and are connected to should be the pinnicle of what makes a caring community, but with caring comes added strain and stress, especially with the pressures on health and social care.

So with those added pressures, it is important unpaid carers know their rights. This is just one of the reasons unpaid carers and those that work with them should pay attention to Carers Rights day 2021.

The whole idea of carer’s rights day is

  • Making carers aware of their rights
  • Letting carers know where to get help and support
  • Raising awareness of the needs of carers

So under the carers rights act 2014.

Carers have the rights to

  • A choice as to how your personal budget is managed.
  • A personal budget to meet any ‘eligible needs’
  • Be helped to develop a carer’s support plan Have an assessment of your own needs as a carer (either jointly with the person you care for or separately)
  • Have your say if you are no longer prepared to care, or are not prepared to do an element of caring
  • Have your views taken into consideration by health and social care services when supporting or treating the person you care for
  • Specific advice and information for carers that you can understand

Of course There is no legal obligation to be a carer as unpaid Carers have the right to choose to provide care.

However it is also important that most people are compelled to care because of experiences with a health & social care system under strain. So if you are an unpaid carer and even if you miss out on carers rights day, then please check out the links below my video.

Its never to late to know your carers rights

HSJ Awards 2021 – System Led Support for Carers

Welcome to a quick blog from carer matthew mckenzie. Just last night I went to the excellent (Health Service Journal) HSJ Awards 2021.

Taken from the HSJ website – The 41st HSJ Awards culminated in a ceremony shining a light on healthcare excellence at Evolution London. From senior leaders to front-line staff, all finalists have been a source of life-changing and much needed work sharing best practice, improving patient outcomes, and being innovators of better service.

As we all know due to the pandemic and a few other things, the NHS is under immense pressure and whatever pressure the NHS and social care suffers from, it does not take long before unpaid carers take on that added strain. Many patients and unpaid carer’s are often forgetten and although awards are necessary, it is so important to award the work done to identify, support and keep track of the many millions of unpaid carers across the country.

The entries for 2021 were very impressive and numerous as many healthcare systems took up the challenge. For those who managed to get their projects to be judged, I can say there are all winners, but unfortunately there can only be one HSJ winner.

As one of the judges for the entries I felt I learned a lot on the system led carer category. I found out how dedicated the healthcare professionals were in pairing up with stakeholders and those who support unpaid carers.

The judging process was led by Jennifer Kenward who is the senior NHS England lead for experience of care, which is a much needed role for increasing the identity of carers all around the country. You can read her blog in the link below.

Jennifer Kenwards HSJ Blog on learning from carers

Going back to the Annual HSJ Awards, it was held at the Evolution London. A massive venue which is just right for the fabulous event.

Evolution London Website

I was a bit late arriving to the event due to fighting with my bow tie, but the venue was easy to get to from pimico underground station. I was worried about the covid situation of such a large ceremony, but the way the event was run, everything was strictly monitored.

As a judge we were placed on the front tables to get an excellent view of the awards hosted by the brilliant Sue Perkins who is a great British icon and is passionate about the NHS. The food was excellent and HSJ staff looked after us very well.

I managed to greet friends and partners from Carers UK, Carers Trust and NHS England as well as fellow judges. Obviously I gave them a signed copy of my book (I never miss a trick).

The winner for our category ” System-Led Support for Carers” was “Care for the Carers” on their Intensive Support to Carers in Hastings.

The highly commended award went to West Yorkshire and Harrogate Unpaid Carers Programme, Covid-19 Vaccination Programme for Unpaid Carers.

You can find out more about Care For the Carers off their website below.

Care for the Carers website

All in all, I felt very previllaged to be included as a judge for the HSJ System-Led Support for Carers category for 2021. A very challenging year for the NHS and also challenging for unpaid carers, but entries for such awards set the standard for others to follow. I urge those across the country to take up that challenge and care for the carers.

Well done Care for the Carers, your HSJ award is historic.

Joint Southwark & Lambeth MH Carers forum September 2021

Welcome to the September update of my joint Southwark & Lambeth mental health carer forum for 2021. This is just a brief update since I have been rather busy at work, but for those who couldn’t always attend the forum, I often try and blog any updates if I can.

The speakers for september are as follows.

Rohati Chapman Executive Director of Programmes and Impact for Carers Trust
Lambeth Carers hub new mental health carers lead.

  • Peer group updates

Usually the carer forum makes time for speaker engagement, but this time we decided to check up on how we are coping through the pandemic in a peer supportive manner. There were updates from the attendees on the pressures of providing care regarding challenging access through health and social care.

Rohati Chapman presents

After the peer group catch up, Rohati entered the zoom meeting and presented on her role as one of the executives at the National carer organisation “Carers Trust”

It was great for Carers Trust to engage with unpaid mental health carers from Southwark and Lambeth. Since Carers UK sometimes attend our carer forums, where they are due to attend for November at my South West London carers forum. Rohati in her new role drive the Carers Trust’s programmes this includes Triangle of care, she also has a big impact for Carer’s Trusts Network Partners as in carer centres and carers.

Rohati mentioned she had been wanting to make it to one of Matthew’s carer forums and she is happy to attend the Southwark & Lambeth forum since it is in her area and rather local. She was happy to take any any questions and also happy to give us a bit of an overview of what Carers Trust are doing. Rohati did mention it is unfortunate that both Southwark carers and Carers Lambeth Hub are not a network partner, nearest carer’s partner actually is Wandsworth carers centre, which on a good note is covered under my SW london carers forum. Rohati menioned the other carers trust partners are Carers Lewisham and Bromley Wells.

Rohati was interested in what support are you getting? as in what is good and what’s not. This is where she will take back info to her colleagues in the network development team.

There was a very long discussion about the challenges of mental health carers, plus what is working and what could be useful. I pointed out that mental health carers tend to lack peer support and advocacy when it comes to mental health services. These type of support can even be a challenge to service users or patients, but we cannot forget that carers and families often need advice if carers are intimiated by processes and procedures from health and social care. Another thing that was raised was referrials to carer peer groups as referring straight to a carer centre does not always cut it. There was talk regarding social prescribers and GP surgeries needing to up their game in identifying carers and referring them to peer groups so that way carers can look after each other. Members of the forum are aware that GPs are under pressure and they are also aware that primary care networks are developing, but too often social prescribers focus on older adults and there needs to be a push to identify mental health carers.

Other suggestions were mental health officers at GP surguries to speak to families and carers and GPs and accute hospitals to link as much as possible to the local mental health trust.

Rohati finished up by mentioning network partners have increased access to funding and with those funds it can help develop support for local unpaid carers.

To find out more about Carers Trust see the link below.

https://carers.org/

Update from Carers Hub Lambeth

A brief update is that Karen Ibrahim is now the mental health support lead at Carers Hub Lambeth, this means that mental health carers continue to have a dedicated carer support from Lambeth. Karen talked more about her role and how the Lambeth mental health carer peer group will help support carers in that borough. As I often attend the carer peer group over at Moasic Clubhouse, I look forward to development of the carer network.

SW London MH Carer Forum August 2021

Welcome back to a brief update of my South West London mental health carers forum. It is not like my other forums since this one tends to be a hybrid of peer support and carer engagement. Plus its probably my largest carer forum which cover’s 5 boroughs or six boroughs if we engage with NHS South West London CCG, because the commissioners cover six boroughs that being the borough of Croydon.

Anyway, one of the main focus is on how South West London & St George engages with unpaid carers, especially about mental health services, but the forum can then become a networking forum for other carers even outside SW London as sometimes national speakers may appear.

The speakers for August were

Elizabeth Stirling the new CQC inspector for SWLSTG

Tristan Brice from London Association of Directors of Adult Social Services.

Elizabeth presents on what the CQC is about

Since the CQC spoke at length regarding roles and plans, I can’t blog too much about that, however Elizabeth was kindly referred to engage with our group since their interested in how the group is supported.

Elizabeth spoke on the following.

  • How she has Worked in health and social care for 23 years
  • Worked as a support worker for four years
  • How she has been a Social worker since 2005
  • Worked for Mental Welfare Commission for Scotland
  • Has lived experience on caring regarding mental health.

Elizabeth then moved onto what the CQC does as in that the Care Quality Commission monitor, inspect and regulate services to make sure they meet fundamental standards of quality and safety, and they publish what they find, including performance ratings to help people choose care.

The CQC also set out what good and outstanding care looks like, and they make sure services meet fundamental standards below which care must never fail. Obviously, the CQC use information and evidence throughout their work, including people’s views and experiences of care. The CQC work closely with the public, other organisations and local groups across everything they do, that includes patients and carers of course.

Next Elizabeth explained the core fundemental standards for the CQC and what they look for. These would be

Person-centred care
Dignity and respect
Consent
Safety
Safeguarding from abuse
Food and drink
Premises and equipment

To also mention although the above is important, the CQC do look for other things as well. With the list above, they apply to fundemental standards that apply to mental health trusts

There was a very long Q&A session regarding these standards that apply to the rating of SWLSTG, but the important distinction was that it was coming from a carer’s perspective.

Each of those standards mentioned must follow a criteria of questions usually 5 of them, which are

Safe: you as the patient protected from abuse and avoidable harm.
Effective: your care, treatment and support achieves good outcomes, helps you to maintain quality of life and is based on the best available evidence.
Caring: staff involve and treat you with compassion, kindness, dignity and respect.
Responsive: services are organised so that they meet your needs.
Well-led: the leadership, management and governance of the organisation make sure it’s providing high-quality care that’s based around your individual needs, that it encourages learning and innovation, and that it promotes an open and fair culture.

Of course there has been a massive impact regarding how the CQC works and I had asked Elizabeth to talk in depth on covid-19.

Elizabeth talked about how the CQC had to adapt on how they work. This was a mix of on-site and off-site methods. In March 2020, the CQC suspended their routine inspection programme in response to COVID-19 and developed their ability to monitor services using a mix of on-site and off-site methods. Other changes were on improving the CQC’s ability to monitor risk to help them be more targeted in their regulatory activity. With that, by bringing information together in one place for inspection teams, presented in a way that supports inspectors with their decision making and by testing elements of how they want to work in the future, including how they provide a more up-to-date view of risk for people who use services.

I myself have always stressed to carer’s that the CQC is not a one way system, unpaid carer’s must provide the CQC with information and also requests so carers are working in partnership with the CQC. Elizabeth expanded on this by stating Information from patients and carers is very important to the CQC. All the information the CQC receive will be added to the records they have for each care service. The CQC can use this information to help decide where to inspect next, and what to look at when they do. When the CQC receive information about a concern for someone’s safety, they will treat it as urgent.

The CQC also use what people tell them to understand the quality of care they get from services like care homes, care agencies, hospitals and GPs. It helps make care better for everybody.

Again there was a very long question and answer session from members of the forum, but for those reading this blog please see the below.

CQC Feedback site : https://www.cqc.org.uk/give-feedback-on-care?referer=promoblock

You can also call the National Customer Service Centre (NCSC) on 03000 616161 or email enquiries@cqc.org.uk.

  • Tristan Brice presents

To be honest the conversation stretched so long with the CQC, that Tristan had to come back another day, which I will blog at a later date.

This is the brief august update of my SW London mental health carer forum.

My new carer book published

Welcome back to another blog by unpaid carer Matthew McKenzie. I am slowly breaking into the world of becoming an author and I am pleased to announce my 2nd book on the experience of caring is out.

The title of the book is called : Experiencing mental health caregiving – Unpaid Carers

Obviously due to my previous role caring for my mother, this 2nd book focuses on mental health carers. What I mean by that is getting views, statements and comments from those who look after someone suffering mental ill health. The book is not to be taken as an audit, but a philosophical look at experience of care, I wanted those to be philosophical on their experiences of being a carer and anything mental health related. There will be comments that stated facts or sometimes seem like a pitch, plus some comments might offend some people, but it is very important to just get the voice out there and understand why someone would comment in such a way.

I am known for my networking to carers and this was the nature of this book. I wanted the book to be a link and connection to other unpaid carers, this is so that there is some form of identity for carers and a way to relate to the experience of care. The book is very large with over 300 pages and 33 chapters. The book however was quite challenging to compile experiences, because quite a few comments brought me back to when I was a mental health carer and some things hit hard.

To research the content for my book, I had to approach many mental health trusts and carer centres to promote my project and I thank those that have contributed.

Many thanks to CNWL, West London Health trust, Nottinghamshire Healthcare NHS Foundation Trust for their lovely newsletter, Cambridgeshire and Peterborough NHS Foundation Trust and many other mental health trusts allowing me to present about my project.

I also approach universities especially those who taught psychiatry, psychology or those who led on social care courses. I wanted their opinions as well, because if you want nurses, social workers, doctors and psychiatrists to work well with carers, you have to start where they are being taught their profession. I did want to include contacts from large organisations, but it was too difficult, although I do hope they support and promote the book. If anything is going to bring changes to the experience of care, it needs to be the voices of carers being amplified.

Next year, I certainly want to expand on the chapters I wrote in this book especially regarding the views given by those who contributed, however before I undertake my next project. I want to try my hand at poetry.

Hope you enjoy my latest work.

Lewisham Mental Health Carers forum September 2021

Welcome to the September update of my Lewisham mental health carer forum 2021. As a note, the carer’s forum is an engagement group aimed at those caring for someone who suffer’s mental ill health.

Since the carer’s forum focuses on carer’s from Lewisham, we tend to get engagement from mental health services of South London & Maudsley NHS foundation trust. I am grateful for the support our local NHS trust gives to families and carers. It is important that families, friends and carers remain that strong link in coping and recovery.

The speaker’s for September were

  • Leonie Down – Lewisham Head of Occupational Therapy and Partnerships Lead from South London & Maudsley
  • Ros King – Regional carer lead for London from NHS England
  • Charles Malcolm-Smith – People & Provider Development Lead from NHS South East London CCG (Lewisham)

Leonie Down presents on the importance of Occupational Therapy

As mentioned earlier, South London & maudsley prides itself on the engagement and involvement of those who use it’s services and those who care for patients. It was great to have Leonie engage with our carer group on the importance of Occupational therapy.

Leonie stated her talk on how occuptional therapy can help people manage their routines at home, and also occuptional therapy helps look at the physical health component and ways for people to adapt to disability. Leonie presented an example from The World Federation of occupational therapists (WFOT).

“Occupational therapy is a client-centred health profession concerned with promoting health and well being through occupation. The primary goal of occupational therapy is to enable people to participate in the activities of everyday life. Occupational therapists achieve this outcome by working with people and communities to enhance their ability to engage in the occupations they want to, need to, or are expected to do, or by modifying the occupation or the environment to better support their occupational engagement” (WFOT 2012)

Leonie admitted the defination was a bit wordy, but it does encompass the fact that it’s about activity and occupation and that’s the medium through which Maudsley NHS deliver their interventions.

Leonie has worked as an OT for around 30 years, a lot of people ask her, what’s an OT do? So she often responds that it’s about supporting people to do the things that makes them feel better. So it’s very much about what people spend their time doing, what people feel, what activities that make people feel feel better, make them stronger in themselves, plus setting their direction towards recovery. As an OT, it’s a degree that they have three years in training as an occupational therapist, which ultimately equips them to be able to understand the needs of each individual. These could be what strength and barriers might be around the person or being able to access activities that make me feel better, and that could be multifaceted.

Leonie then presented on the following, where how can service users benefit from OT. The following points were explained.

How OT promotes self-expression, creativity and the development of hobbie

Where OT can improve / develop

  • feelings of self-esteem and confidence
  • level of self-awareness, understanding and insight
  • ability to manage health conditions and ADLs
  • social interaction and communication skills
  • coping strategies and self-management techniques

How OT supports the development of roles, responsibilities and routine, as well as identifying and working towards goals

Promotes healthier lifestyle choices and greater levels of physical activity

Increases the chances of an earlier discharge and the likelihood of them being able to remain safe and independent in the community

Improves the patient experience and wellbeing.

Leonie then moved on to present the work being done in Lewisham regarding OT, where they are trying to work with as many social inclusion partners as possible. So one half is Lewisham community connections, where people are helping those using the services navigate through to something that they can be doing to help their health.

The other aspect of OT in Lewisham, is very much about trying to co-produce and co-deliver a program of groups. Which is for people that that may benefit from the environment that involves other people. This is because other people, from the same environment can learn or hear different insights, which can lead us to start making sense of our own experiences and possibly develop tools to become self reliant.

There was then a Q&A session from carer members of the Lewisham MH carer forum.

Ros King from NHS England speaks about ICS changes

Ros King kindly engages with my carer groups when she can, so today she was invited to speak about the important of Integrated Care Systems. Ros started explaining about NHS England and how it is a huge organization and can be very complicated. Ros mentioned how NHS England is basically the body that sets health policy with the department of health and social care. Such policy helps plan for what the health service will be focusing on where It also holds allocated budgets. The budgets are then allocated down to CCGs where Ros explained that there has been quite a few changes.

It was explained that a couple of years ago, the responsibility was around Clinical Commissioning Groups, and NHS improvement was concerned with providers, so acute trusts and some changes were implemented which led to a merger to become NHS England & Improvement.

Ros then explained a bit about The national teams and the regional teams. Where there are seven regions across England. As in other countries just NHS England we have Wales, Scotland, Northern Ireland, which have different arrangements.

Ros talked about the London region and what sits within the London region, where there are five integrated care systems. These being Southwest London, southeast London, North Central London, northeast London and northwest London. Ros joked that she really hopes nobody has any questions around which CCGs sit within such ICS because that would take some time. Ros talked about how the CCGs have merged to cover such regions around London.

Ros moved on to talk about how NHS England & Improvement would demand lots of information, especially very complicated information about how the CCGs and providing trusts were performing in all sorts of areas. Such requests for information could be at a very short notice because those at NHS England & Improvement have to feed this info back to the organisation.

Ros felt there has been a lot of changes as to whilst regions do still have accountability, So if an acute provider in Lewisham, has really serious concerns and risks about performance of the quality of the services they’re providing, then it is still very much NHS England regional team responsibility to manage and try and work with the provider to improve.

The idea is rather than an acute provider struggling with performancing issues, they should learn from other providers and network together. Still, NHS England has commissioned a lot of things, but now only comission small amount of services which are specialist services. These will be transferred out into ICS.

Ros then talked about how they manage complaints around a primary care service. So GPS, dentist, ophthalmologists, pharmacists and so on. Such complaints would come in to NHS England depending on the complaint e.g. if you have a complaint about any of those services, it would come through to NHS England, or if you had a complaint about a service that was commissioned by your ICS, or your CCG, that would go into the CCG or directly to the organization that’s providing the service.

Charles Malcolm-Smith presents on ICS at a local level.

I had a lot of support from engagement representatives of NHS South East London CCG where Greenwich, Southwark and Lewisham CCGs had organised what to present to carers and also who can support Ros Spink’s presentation.

In the end Charles who is the people & Provider Development Lead from NHS South East London CCG (Lewisham) continued the presentation.

Charles talked about what integrated care system changes that are in the pipeline and how they are designed to work together better. With all the talk about health and social care needing to work better with physical and mental health services, community acute services and primary care, it’s all about the different parts of the system working together and this is about structural change.

It was explained that we have had integrated care systems for a while, but their status had changed from the sustainability and transformation partnerships, where they became ICS even though it is still a partnership status, with the health and social care bill now making ICS statutory organisations. Charles explained that there will be four building blocks to do an ICS. So the ICS for southeast London will have an integrated care partnership board and this is the alliance of organizations that represent across southeast London. These will include the NHS organisations, local authorities and made up of the chairs of the trust.

Elected representatives and elected leadership from each of the local authorities as well as the representative director from Adult Social Care, children, young people services, Healthwatch and voluntary and community sector organizations. Charles reassured us that in southeast London, there aren’t any private sector organizations involved in the partnership since there were a lot of questions from members about privatisation creeping in.

Charles talked about how the Integrated Care board brings the NHS together so it brings commissioners and providers around the table. Charles mentioned it was an important development because the last couple of decades, it has always been a commissioner and provider that were split causing queries with contracts. although there will still be commissioning and providing but the approach to it will be about joint planning. So there will be working together more closely than before.

There were many questions from carer members on if the Local Care Partnership board will debate the importance of unpaid carers and include them in their decisions.

This concludes the brief update of my Lewisham mental health carer forum for September

Bromley, Greenwich & Lewisham BAME Carer Forum August 2021

This is a brief update for my BAME mental health carer forum covering a mix of London boroughs between Oxleas NHS Foundation Trust and South London & Maudsley NHS Foundation Trust.

Obviously out of my 6 carer groups, this forum focuses and discusses on the unique experiences of Black Asian Minority Ethnic groups. I know some people want such groups to be specific, but to be fair a lot of the topics raised in this forum do focus on the afro caribbean element, although some members are mixed from the Asian community, which is growing as members from other MH NHS trust attend.

The speakers for the month of August were

Malik Gul – Ethnicity & Mental Health Improvement
Jacqui Dillon – Race and mental health
Cordwell Thomas – Black Thrive
Dawn Irving – Maudsley NHS Quality improvement

  • Malik Gul presents on Ethnicity & Mental Health

Malik was really pleased to be among carer members of this forum. Malik felt the issue of race and mental health is not new, this is especially in the field of discrimination and racism in the services of our communities. Malik stressed that what we’ve had to endure as black and brown people has been known since we first landed in this country, But since the main kind of population of migration into this country, following the Second World War, and what is euphemistically known as the Windrush generation.

Since the days that we’ve arrived in this country, we have been discriminated against. Racism is built in to the very fabric of the systems that we all live in, and we must admit that it is a part of the system, and all of us in this conversation have experienced that. We’re all a part of it and we have all been discriminated against, in one form or another.

what Malik finds really interesting about the work he does, is that he has been working in Wandsworth at the Wandsworth Community Empowerment Network for the last 20 years.

More info on the Wandsworth Community Empowerment Network

It is now their 20th anniversary and the organization was founded in 2001. The thing is the organisation knows about the history of black discrimination. Many of us will know about David rocky Bennett, a black man, Rastafarian man, who was in mental health facility in Norfolk, and unfortunately there was a dispute on the ward, something really minor, Malik thinks it was about who could use the phone and who somebody jumped in front of the queue, or something like that. He was held down by the staff, and died in mental health services, what is worse is this is just one of the many cases of ethnic minorities dying not of mental health services, but within mental health services.

So the history of black people in mental health services being discriminated against is a story that we’ve all lived and experienced for the better part of 40 to 50 years. Malik felt that he has to us that nothing has changed.

Malik works very closely with Southwest London & St. George’s mental health trust, and also very closely with South London & Maudsley as well. In fact the new chief executive of SL&M is David Bradley who was the former chief executive of SWL&STG. Malik mentioned how he worked with him for about seven years and over the last 20 years, if you look at the figures for black people where it comes to over representation in medical health services for 20 years, it shows little to nothing has improved, and in fact, in some cases, things have got much worse. Malik mentioned that he has great admiration for David because he always had the foresight to work with the community and is bringing over ideas from his previous MH trust over to SL&M.

Malik challenged us that if you go on to the wards of Springfield hospital, as he does on a regular basis, about 50-60 70% of the people on the wards are for black and minority ethnic communities. Malik pointed out that we had to look at the over representation of black people in communities particularly in services particularly black, Caribbean, and black African.

Malik stated that he has to say that our mental health institutions are not the ones who are going to address this type of problem. He felt SL&M is not the solution to over representation of black people in mental health services, nor is Southwest London St. George’s mental health trust. Nor are any of the institutions that we are relying on to fix this issue. They are not going to address the over representation of black people in mental health services. It will have to be lead by the community, but there is a power problem, an owership problem a distrust problem. This overrepresentation in mental healths services has been going on for so long that the community has felt apathetic to any drive in order to change the status quo.

There was a very long discussion on what was needed to begin to address this issue, but the conclusion is it must from ethnic minorities, but controvesally we cannot expect the victim to solve the problem as we cannot expect the masters tools to change direction.

Jacqui Dillon presents on Race and mental health

Dr Jacqui wanted to talk a little bit about her own experiences, and on why Matthew invited her to the BAME forum. Jacqui Dillion is the former chair of the national hearing voices network, which is a user led charity that was set up about 30 years ago to provide an alternative to mainstream psychiatry.

Jacqui felt she is basically a survivor. she has used psychiatric services and one of the things that she often says about why she has worked as an activist in mental health for 25 years, is because her experiences of psychiatrists, which unfortunately was pretty devastating.

Jacqui felt that one of the things is if she managed to survive services, she would do all she can to try and change them. So that’s what she has been trying to do for about 25 years now. One of the things that she thinks is really important in terms of what we’re talking about today, in terms of the hearing voices network approach is that we do not advocate a Eurocentric model of the mind.

She felt that this is one of the problems that Malik talked really passionately and eloquently about on the huge over representation of black, Asian, and other minority ethnic people using the mental health services. One of the things that’s really important about the hearing voices approach is that this space within that approach is to both acknowledge the live reality of racism and oppression, which in her experience is often taboo in traditional settings, a lot of people flinch and are very frightened, and can get quite defensive about acknowledging that black and Asian people are massively over represented in services, and what’s at the heart of all things, which ian macpherson talked about in the macpherson report.

Our colonial history is built into the fabric of the these institutions, and things like unconscious bias that professionals come with, and often they’re not aware of their own biases, and then making treatment decisions based on some quite racist assumptions that have been intertwined with such systems.

Jacqui feels a lot of despair, about the over representation of many different people from different ethnic backgrounds, although she is really uncomfortable with the term minority ethnic groups, because since she lives in Hackney people from black, Asian and other minority ethnic communities are 50% of her community. So she finds the description a bit reductive and these kind of acronyms we use can be a little bit dehumanizing.

Jacqui also felt she hasnt seen things improve, there used to be an organization’s called family health, ISIS, which she worked with, about 17 years ago with someone called Dennis who she did a lot of work with in terms of trying to bring the hearing voices approach to FHI as an alternative to traditional psychiatry. She was sad to hear that Family Health ISIS is now closed as with many community groups looking to set up protected spaces for those who are vulnerable and what remains are these massive mental health trusts overpowering the voices of the vulnerable.

One of the things she would like to see is a move away from locating people’s problems solely within themselves and seeing that we’re all part of a system. Jacqui feels that one of the problems with the biomedical model, is by saying that people have illnesses, what we’re doing is we’re kind of saying, madness and distress don’t really make sense and limiting away the causes of such illnesses such as the pressure of society, racism, isolation from the community, no safe places, lack of resources, lack of community, lack of understanding and so on.

Jacqui felt that we give illnesses these bizarre names like schizophrenia, which she thinks, further mystifies what are actually very human ways of coping with devastating and overwhelming experiences. So she personally does not subscribe to that kind of biomedical language and feels that it is really unhelpful. There’s actually tons of research that has shown that using medicalized language actually increases stigma and decreases people’s empathy. Jacqui mentioned that someone put on the zoom chat about how trauma informed her, Jacqui felt this was more interesting about how something like trauma informed care can develop, but talking about language is a problem where the term trauma can minimises experiences. We have a long way to go in psychiatry before we even get to the idea of recovery.

If you want to know more of Dr Jacqui Dillon’s work see the link below.

http://www.jacquidillon.org/

Cordwell Thomas presents on Black Thrive

Next to present was Cordwell thomas on his role within the organisation Black Thrive. Cordwell spoke about what Black Thrive is doing to promote and also promote what the imbalance of what Malik and Jacqui clearly stated, and also the questions coming from what carer members raised, Cordwell felt there is a concern on black individuals within the black community, having a say in their mental health and promoting the services and shaping the service to be fit for purpose. Cordwell wanted to go into a small conversation about the Patient Race Equality Framework.

On Cordwell’s role, he has several hats. He has a full time role mainly within the community, one of which is on the Black Thrive committee. On the Black Thrive committee, there are various agencies from public services, these are ranging from social workers, public health officers and directors, where they also have the police and many more. So fortunately they also have directors and decision makers who are on the table of Black Thrive and they shape the way they engage with communities and how those services engage with black communities in particular.

So, within that role Cordwell helps to represent the community, but within Black Thrive, he is an independent advisor, which enables him to liaise with South London & Maudsley NHS, and also help develop services within SL&M. In particular those services that have been disproportionately affecting black individuals within the community, like individuals from Caribbean descent.

With such roles it is what brought him to this forum to have a conversation with us, because one of his roles, actions or projects, is to be the lead person from the black community driving the trusted friend project,

Cordwell mentioned that he presented with a colleague from SL&M the trusted friend project, a couple of weeks ago at the Lambeth Carers Hub peer group, which Matthew attended. from that forum Matthew requested us to speak about trusted friend for this forum. Basically what it’s about is if you imagine a situation where you’re in a strange environment, ie as if you’re now a psychiatric inpatient, at one of SL&Ms hospitals, if you imagine yourself in a strange environment and you do not have a voice. Now the role of the trusted friend is to ease and promote that de escalation. So the impatient ward may go through all their various roles of de escalation on an issue, however the trusted friend will come on the ward and be that middle person that liaises with the ward staff and say what the wishes of the individual are.

More info on Black Thrive

There was most in-depth discussions about other Black Thrive projects, but for now this was the brief update of the Bromley, Lewisham & Greenwich MH carer forum for August 2021

Joint Southwark & Lambeth MH Carers forum August 2021

Welcome to a brief update of my Joint Southwark and Lambeth Mental Health carers forum for August 2021. There was no speaker for that month so I presented on the following being:

The Importance of carer involvement

Plus I also presented on Carer empowerment

Funnily enough the turn out for the joint forum was very good and to be honest I couldnt present for a long while due to carers speaking to each other on how things have been developing for them.

Continue reading

Greenwich Mental Health Carers forum August 2021

Welcome to a brief update for my Greenwich mental health carer forum. One of the carer groups I run with the support of Greenwich carers. As usual the forum focuses on unpaid carers who care for someone with serious mental ill health. The forum runs very 2 months since I mostly focus on my other group for greenwich, which is a carer peer support group.

The greenwich MH carer forum also focuses on engagement with unpaid carers rather than a peer supportive environment. Speakers for the Greenwich MH carer forum were as follow.

Victor Aigbe-Anderson – Social Care Assessor

We also had engagement from Greenwich CCG who have been active engaging in my carer groups.

Continue reading

SW London MH Carer Forum July 2021

Here is the brief update of my South West London carers forum for July. As mentioned, I have not been blogging much due to working on my 2nd book on unpaid mental health carer experiences. I still run my carer groups including helping out West London NHS health trust on their Black Asian minority carer peer group.

However back to South west London.

The following speakers for July were

Phoebe Averill – PHd Student at Kings College
Carol Ellis – Carer speaking about her son’s new book
Ros Spinks – NHS England Commitment to Carers programme
Myself on Why unpaid carers must hold to account

PHOEBE AVERILL PRESENTS ON HER PHD PROJECT

Phoebe from Kings college University spoke about focusing on safety and quality of care in community mental health Services. So as part of the research, she wanted to invite carers to share their views. Phoebe wanted to give us just a little bit more info about the research as the problem of patient safety hasn’t really been a given as much research which is limited, although there is a growing amount of research from those interested in this area. Still, it’s mainly focused on inpatient mental health services. In actual fact, most mental health care experiences are actually in community settings.

So that’s really important that patient safety in community mental health settings are researched as well. So that’s what she is trying to do with the research. Phoebe is speaking with families and carers of adults with mental health problems in the community services. What she is trying to find out is what kind of “safe and unsafe” care means to the carers in this context, because it’s not very well Understood. She would like to know what types of safety issues you worry about as carers and any ideas about what can make community mental health care safer and would could improve the services. There really is no right or wrong answers, it is about hearing carers experiences and opinions.

Phoebe also has spoken to services as well as to healthcare professionals, but it’s really what the carers views are? So what does the actual study involve? It will be a discussion with other carers since that will be what kind of format unpaid carers prefer.

For more information about the project I have included a screenshot below.

There were quite informative questions from carer members of the forum, but I have a lot to catch up with. So will move on to the next presentation.

  • Carol Ellis and her son talks about his new book

Carol’s son Shaun Ellis started off talking how he ended up with depression due to the death of his father. His book “A Gentle Breeze: Living with depression” focuses on how he managed to survive attempted suicide and his journey battling depression.

Shaun wanted to highlight such experiences through his words and actions. This is why he chose to write a book about his experiences. In this book Shaun describes all the techniques he used to battle his depression. As well as sharing his story, he wants to reach out to fellow suffers and encouraging them to seek the help they need.

Shaun then read a couple of passages from his new book, which led to questions coming from the carer members of the forum.

I have placed a link for those interested in the book below.

A Gentle Breeze by Shaun Ellis

Ros Spinks from NHS England & Improvement presents on the Commitment to Carers programme

Ros from NHS England kindly engages with some of my carer groups I run online for half of London. She spoke about her role as one of the regional carer leads, however she covers London, while the rest covers England. Ros spoke about how the ‘commitment to carers programme’ is linked to NHS Englands long term plan, which is actually 2 years old. Ros talked about one of the big areas which are the quality markers in primary care. These are a set of standards that carer’s should expect from any GP practice across the country. However it is not mandatory, which is a bit of a challenge, because it can be difficult to get GP practices to do things in different ways, not because they’re bad practices, but due to such challenges.

Another quality marker is on identifying carer’s because there are still issues regarding the identification of carers in health and social care. It might be that some people do not identify themselves as carers, but that is not the point. It is up to the NHS and social services to help people understand and help educate them on what support they can get as an unpaid carer.

There was a Q & A session from members of the South West London carer forum.

One question was on why are the quality markers not mandatory.

Ros mentioned there has been discussion to make those mandatory, but raised the option that some GP practices work differently and would learn better from other GP practices in a network. Sometimes it is better to try different options ranging from training to rewards if GPs do well in identifying carers. Ros mentioned there is some leverage with the CQC as they use the NHS England quality markers to see if GPs are actually listening to their patients and carers.

Another question focused on what would Ros like to see in place to bring equality to unpaid carers to the level their patients have.

Ros felt she would like to see fantasic carer support centre that actually has the resources to care for the unpaid carer. She would also like to see a carer’s champion just like what they have in the GP practices in the London bourough of Hilligdon. Those in the GP practice could act as the carer champion, which could be the receptionist or GP and surprisingly it does not cost anything, they can help being carer friendly, identify carers and help refer them.

Another question which was very important came from a carer wanting to know what secondary care was doing for carers and if they follow NHS England & Improvement quality markers.

Ros was delighted such a question was asked and she mentioned hospitals were working towards a carer’s card or passport, actually some hospitals already have this and it is a recognition that a patient has someone who cares and that carer does need support and to be kept informed, infact the best secondary support from hospitals is that the carer will be involved in all the care decisions made and not just told what will happen or the carer be seen as an afterthought.

There were many other questions raised from carer members, but below was the one raised by myself on the commitment standards as I was interested in how NHS England’s Commitment for Carers has been progressing since it’s release around 2014. Ros responded to all of them, where some of the responses I have added below since at the time of the document it mentioned a few tasks were ongoing.

  1. NHS England to raise the profile of what a carer does and how they can be supported with health care staff.
  2. NHS England signed up and supports and promotes annual Carers Week campaign.
  3. Establish a NHS England board level ‘Carer Champion’ and support NHS England board level members to shadow a carer.
  4. A senior NHS England Carers Group to take ownership of the ‘Commitment to Carers’ document and NHS England’s support for carers.

Ros mentioned it is Jenifer Kenward who is on the senior management team and she links to the departments health and social care as well.

  1. Collaborate with carers’ organisations to establish how carers award schemes might be extended to commissioners to support improving the experience of carers across England.

Ros responded these would be your Carers UK and Carers Trust organisations.

  1. NHS England in partnership with NHS IQ to hold a national NHS Young Carers event to support how young carers can be better supported and the wellbeing of young carers promoted by the NHS.

Ros responded that usually three times a year, every region has a certain amount of young carer champions that come together to help drive the young carer’s strategy.

  1. NHS England to support a Carers Champions Network bringing together the healthcare and carers groups.
  2. NHS England will continue to implement the Equality Delivery System for the NHS, involving staff, patients, carers and the community to ensure equality is embedded within all of its core business including workforce development.

Ros mentioned NHS England has to do this, its practically a legal duty, she went into more detail about this.

  1. NHS England is committed to supporting innovation in the NHS and will ensure that innovative ways of engaging with and providing care for carers are considered through the national innovation fund schemes.

Priority 1 Raising the Profile of Carers

  1. NHS England to support the relevant bodies, including Health Education England, to support the use of packages for health care staff that increase carers awareness, and support staff to identify, involve and recognise carers as experts, and as individuals with their own needs, choices and aspirations.

On this question, Ros stated that Health Education England do have a training package that actually includes all frontline staff to increase carer’s awareness. Ros still mentioned there still is a problem to make training mandatory and she would very much like to see that.

  1. NHS England to support the relevant bodies in signposting carers to information and advice about support available. The reason I asked Ros this question was because I felt even though resources are out there for carers, it seems not many carers are using them. I am aware there are social perscribers, but they seem geared for older adults to combat loneliness or for patients.
  2. NHS England to contribute to increasing the awareness within the NHS of the duties and functions of local authorities with regards to carers.

Ros spoke how NHS England has made big strides on this task specifically for Integrated Care Systems (more on that in my September carer forum for Lewisham where Ros spoke about ICS Changes). Ros mentioned there has been much improvement and better awareness from a strategic level to the local NHS level.

  1. NHS England and NHS IQ to liaise with carers organisations and the Royal College of General Practitioners (RCGP) in order to support their work on identification, implementation and sharing of best practice models. (Again, I tend to bother the Royal College of GPs because I was interested in an update to the RCGP carer’s strategy when Judith Cameron was the RCGP Carer leads).

Ros responded this would be on the quality markers from NHS England, but there was also recently a series of events from the Royal college of medicine regarding the focus on unpaid carers.

Priority 2 Education, Training and Information

  1. NHS England to investigate approaches to measure the skills, confidence and knowledge of carers and potential benefits on care and carers.
  2. Data sharing: As part of the Patient Online programme, NHS England to scope the potential for carers to access the GP medical records of the patients they care for, where applicable, and the patient has given their consent.

Ros mentioned a huge amount of work has been done on this since 2014, although due to COVID-19 happening she admits work on this has slowed down. Ros states hospitals should have the access to pull patient GP data if a patient turns up to hospitals very unwell and unable to speak for themselves.

  1. NHS England’s new ambitions for End of Life Care, to be published in June 2014, will include the intentions for support for carers and bereaved relatives.

Ros again talked about the personalisation agenda as there has been a lot of work done on this. We spoke about the lead for end of life care who is Sherone phillips, although Ros mentioned there is a regional lead and a national lead for End of Life care.

  1. NHS England to support timely dementia diagnosis and the best available treatment for everyone who needs it, including support for their carers. For example, the revised Dementia Enhanced Service will include an offer of a health check for carers and signposting for information and support.
  2. Develop a programme of work to support the health and wellbeing of carers through the community nursing strategy.
  3. NHS England’s widening digital participation programme to reduce inequalities: ‘100,000 citizens trained in basic online skills to boost health literacy’ will apply to carers as well as patients.

Ros mentioned this is NHS digital and a lot of work has been done on this, but there is more to do.

Priority 3 Service Development

  1. NHS England will promote and work towards parity of esteem for carers so that mental health and wellbeing is considered and supported alongside physical health needs.
  2. Through work on developing the House of Care toolkit, NHS England will work to bring together all the relevant national guidance, published evidence, local case studies and information to support carers to be informed and engaged in care.
  3. NHS England to include carers in work around developing standards and service components for personalised care planning to help ensure carers are integral to the care and support planning process and are consistent with the National Voices principles of care and support planning.

Ros stated this does happen and that it is important to involve the public, patients and carers into the planning of personalised care. A good example is the work done with people with learning disabilities and those that support them regarding annual health checks.

  1. Patients who can benefit will have the option to hold their own personal health budget resulting in direct benefits to carers, including feeling more in control and perceived health improvements.

Ros mentioned this happens through the personalised care.

Priority 4 Person-centred, well-coordinated Care

  1. Scope how NHS England can most effectively support the RCGP and other partners in the work they intend to develop around carers.

I queried if NHS England also work closely with RCGP, RCPSYCH, RCM and others. Where Ros mentioned they do work across different programmes.

  1. NHS England will consider how carers can be supported through commissioning of primary care including through future developments to the GP contract and enhanced services.

Ros mentioned at some point NHS England pulled back from this, but now there are discussions in place.

  1. NHS England to work with NICE and other partners to develop measurement and best practice guidance in order to increase identification of carers.

Ros mentioned this happened last October, so NICE have issued guidence on how carers should be treated and it complementary to NHS England’s quality markers, it should not replace them. (I have posted a link below that might relate to what Ros mentioned).

https://www.nice.org.uk/guidance/ng150

Priority 5 Primary Care

  1. NHS England to undertake a series of regional evidence summits for carers to establish an independent assessment of the evidence in order to capture, disseminate and encourage good practice.

Ros talked about how the above has happened and has probably morphed into innovated care systems. So this is how NHS England know how Yorkshire, Devon, Surrey have all these brilliant carer strategies, of there are other places as well.

  1. NHS England to maximise opportunities to capture feedback and incorporate into discussions and work to improve quality and inform best practice.

Ros feels this feedback are from monthly calls from carers.

  1. NHS England to undertake a piece of work to understand the impact of current commissioning incentives and system drivers in supporting carers. For example, through the GP contract, revisions to enhanced services for unplanned admissions and dementia.

Ros was not sure, it would be before her time, but it sounds like a one off piece of work, but can follow up on this with us.

  1. NHS England to review current national processes in place to gather bereaved carers’ views on the quality of care in the last three months of life in order to address gaps in evidence.
  2. Where commissioners identify the need for support, co-produce practical tools and a support programme of implementation with NHS IQ.

Priority 6 Commissioning support

  1. NHS England to coordinate effective ways of working by developing partnership links between health, social services and other organisations, including the voluntary sector to establish how carers can be supported as effectively as possible.
  2. NHS England to continue to work with the Standing Commission on Carers.
  3. NHS England to remain a member of the cross government carers strategy board and will encourage and support carers
    organisations to play an active role in the Collaboration for Coordinated Care.
  4. Establish an annual meeting with key partners including carers organisations to monitor progress and review objectives.

Priority 7 Partnership links

  1. NHS England to continue as a corporate member of Employers for Carers.
  2. NHS England to continue to implement and support established policies on flexible working, leave and emp

There were more discussions raised about NHS England & Improvement commitment to carers, but for more information you can check out NHS England’s Bi Monthly Carers Programme Lunch and Learn Webinar. The link is below.

This was a brief update for my South west London carers forum for July 2021.