Tag Archives: carers

SW London MH Carer Forum March 2021

Welcome to the South West London Carers forum. One of the new carer forums I co-chair along with another member who is on the involvement of South West London & St George NHS Mental Health Trust or SWLSTG for short. The carer forum is a hybrid of the other carer groups I run. What I mean by that is somethings us unpaid carers meet together and chat about how things have been going for us. Then other times we have selected speakers inform, educate and engage with us about mental health services and involvement in health and social care. The SW London carers forum started last year (2020) mainly as networking and peer support.

For the March SW London carers forum. We are continuing to seek more engagement, especially when it comes to carer strategies. The carer forum is easily one of the furthest reaching group, since SWLSTG covers mental health services in 5 boroughs that being Merton, Kingston, Richmond, Sutton and Wandsworth. A good thing about those boroughs is I have good relations with all the carer centers and one of them is contributing to my new book.

The March 2021 SW London carers forum had 2 speakers. This is due to engagement from the leads of Richmond’s carers strategies.

For this month we we joined by Heather Begg who leads on Merton’s Carer Strategy.
Plus due to the excitment of the mental health act consultation. SWLSTG was kind enough to send Tom Lelmezh who is the Mental Health Law Manager.

Heather Begg commissoner for Merton’s carers strategy presents

Heather thanked us for inviting her and she reminded us that she is a commissioner in Adult Social Care in Merton. She has worked in Merton for a long time in a number of different roles and has a lot to do with project management and program management. Heather has only just moved into a commissioning role last year, but she oversees their grants program. As she was mentioning earlier, the grants program in Merton is how they invest in preventative services to really prevent, reduce and delay the need for health and social care services for as long as they can support people to stay as independent as they can possible.

So their aim is focused on well-being services. Last year, when the pandemic hit, she worked in partnership with their local voluntary organisations to set up a community response hub. So alongside her role, she has been very involved in that for over a year.

Merton Council as a London borough hasn’t had a carrier strategy for a long time. So they have just gone live with their strategy this year, and it’s a five year strategy. They have been working in partnership with all of these organizations, but most importantly, with carer representatives, right from the start.

So the strategy highlights the support that’s already available to carers across the bar, and carers who use some of those services tell Merton what a difference they make to their lives. However, Merton knows they need to do more. It requires all partners to work together to make carers lives better. When Merton decided they needed a carer strategy. This was in relation to an action plan, that department of health and social care bought out for 2018 to 2020, Merton used the self assessment tool against this action plan to assess how are they supporting carers.

What was clear was that Merton did have pockets of good practice, but not everybody knew about them, certainly not Carers. So Merton needed a framework to put it all together. Therefore It was agreed that Merton would have a strategy, But what Merton would do is they would talk to carers to shape that strategy. So Heather could have come up with her own ideas about what she thought carers needed, But that wouldn’t have made necessarily any sense to carers. So Merton didn’t want to make assumptions. The London borough of Merton spoke with over 200 carers, and approximately 50 professionals to help shape the strategies, themes and priorities.

So a Task group was set up in 2019, to start work, and they were ready to sign off literally a week before we went into lockdown. Unfortunately, the draft strategy got got delayed. But then after the first lockdown, Merton would have been talking to carers throughout that time, and realized that it couldn’t be delayed any further. There was national research on this as well. Merton has just strengthened their rationale for saying, “we know it’s difficult, we know we’re all really busy. But actually we have to prioritize it’s for carers, we have to get moving on this.”

What Merton have to do is recognize the impact of the year, they couldn’t ignore that within the strategy. So Merton did a refresh and refocused a one year implementation plan, what they thought they would do. So instead of saying this is what Merton would do over the five years, which is in the strategy, Merton would have a plan for year one, and this focus on what they think are the most important things to do in year one.

THE 11 PRIORITIES

So Merton identified 11 priorities, and the health and wellbeing board in Merton approved the strategy in November. There was already a young carer strategy in Merton. That was published in 2019, But it was never really implemented fully. So actually what Merton decided to do was to actually align the Young carers strategy, because actually, a lot of the things that Merton was talking about will be relevant to young carers too, with the two carers strategies working together. Heather mentioned that I was talking about the strategy for the mental health trust earlier, and obviously, whilst Merton has got this carers strategy, it will align with other strategies, other policies and other standard operating procedures, as well. Merton want to make sure that they align and link it together really well. So by having those conversations with their partners, they can’t duplicate but at the same time, they can’t make assumptions, because assumptions will mean that there will be gaps in support.

I pointed out to Heather querying who sits on the Health & Wellbeing board off her presentation. Heather responded saying that she is far too junior to be on the health and wellbeing board, but it will be at director level. So it will be directors of the CCG Southwest London, Merton CCG and the mental health trust, community and housing within the London Borough of Merton and other partners as well.

Heather mentioned that every London Borough should have have a health & Wellbeing board. So Merton met together as an implementation board in January 2021. with representatives from the trust from the CCG from the council. But wider than that DWP and carers support Merton and other local organizations like the alzheimer’s society Merton, Merton Mencap, etc. But most importantly, carer representatives as well.

Merton have already set up for subgroups that are aligned to those key themes as well. So all of them have had an inaugural meeting. They’ve had their first meeting. And so Merton are now working through defining what those actions are.

PRIORITIES

Heather continuted to present by mentioning that its not enough to Identify carers but actually talking to carers, this has been a real struggle actually for some of the universal services for GP practices to identify carers. At the moment because informal carers have been identified in Priority six with the vaccine rollout, this was flagged as a big issue that it is about identifying carers.

What Merton at hoping to do to is strenghen identification. It just showed that there was no standardized approach. It’s really put the spotlight on the profile on that, and a lot of the work that Merton are going to be doing initially, within their carer strategy, they will be working with those GP practices, those practice managers, those GP and clinical leads and the CCG to make sure that the information in every single GP practice in Merton is robust and succinct and is used.

Just because somebody is identified as a carer, so what’s the next step? So a carer might be registering today with their GP practice, because they want to be prioritized for the vaccine. But then what next? Is it just to have a carers flag? What does that mean?

Merton are going to do quite a bit of work on that. carers assessments and more. When Merton spoke with carers, some of them said, ” it opened the doorway for so much support. Once I had a carers assessment, it was brilliant. ” However What’s the point? Do Merton need to change the message to make sure that people know what their rights and entitlements are. Regarding assessment. Even if it is horrible word, assessment. I mean, really, it’s just a decent conversation about what support somebody needs, and where to go for, or to be able to share with somebody.

Questions from members

One carer said that they really liked the presentation and great that Merton seems to be doing such a lot. Some of the points that you mentioned, are things that we’ve been pushing for in Lewisham. I wondered whether you considered something around planning for the future. I know there’s the emergency planning. planning for the future is slightly different in the emergency planning and more?

Another carer was very concerned about st george’s acute hospital university foundation trust and that they had evidence loved ones have suffered and died on unjustifiably within merton due to doctors fully aware of their diagnosis of dementia or learning disabilities but still denying the carers access to their loved ones and it’s caused many patients to suffer and die.

Another carer queried into the restructuring of the SW London CCGs. They were wondering about does it work with the multiple CCG and Kingston or the Richmond one? Do they have the same initiative as you have or how does it work?

As for me, I also asked questions as the chair of the SW London MH carers forum. I wanted to know if there was a lead in regards to GP practices. Like in Lewisham, we had a Doctor engage with that BAME forum, the GP leads in regards to all the GP practices and engaging with the members because we’re sort of carer lead. But how, to work with GP practices, you know, not just Merton, but other boroughs on how they can engage families and carers and identify them.

South West London & St George Tom Lelmezh Present on MH Act

Tom Lelmezh who leads on SWLSTG MH Law department kindly engaged carers at our SW London carers forum. Tom started off by mentioning that he would like to say a few words about the reform of the Mental Health Act that currently is is going on.

The government has published the paper or the white paper on reforming the Mental Health Act back in in January, and that paper sets out proposed changes to the Mental Health Act 1983. As we know the very famous mental health act is about how people get sectioned under the Mental Health Act. Tom felt sure we as carers know that all too well. So the paper sets out proposals and ongoing work to reform policy and practice to support the implementation of the new Mental Health Act. It stems from the recommendations made by the independent review. Also, commissioned by the government, it is a big paper, which people can find online, in fact many can just search for it on Google. It should be called “Mental Health Act reform”.

The government is seeking views from everyone, from carers, from clinicians from patients, it is open to everyone who would like to contribute. And the consultation focuses revolves around 35 questions or 35 proposals that the government would like people’s views on. Anyone can submit their views. electronically or just Google it and submit your response. Tom gave members an extra option to send your views to people like himself, and he will ensure to include our views into SWLSTG NHS trusts response.

As a trust SWLSTG are preparing their own response to all 35 questions, and the responses are due by the 21st of April. So they are very busy now putting it all together. It’s basically a big paper and the trust are preparing statistics. SWLSTG are also contacting various groups, including an engagement group like ours, just to see their views on some of the more controversial points.

So the key points in the reform of the Act is that it proposes a wide range of changes to improve mental health services, and people’s experiences under the Act. So the changes, aim to make sure that people are detained for shorter periods of time, and only detained when absolutely necessary. There has been a lot of research that indicated an increasing use of the Mental Health Act, that means more and more people every year, are getting sectioned, deprived of their liberty. And sometimes the same person may get sectioned more frequently. This has to change.

Tom mentioned that there has been a lot of research around the new MH act changes, in fact, the terminal terminology of BAME maybe slightly confusing in this regard, because various ethnic groups within the black and ethnic minority group will behave differently in terms of detentions under the medical Mental Health Act. So for example, Asian groups tend to be underrepresented within the detain population, whereas black groups will tend to be over represented. So for that reason, The category BAME, is probably not very helpful because it doesn’t add that there are varieties within that wider market group. Tom felt that probably this was one of the key drivers for the a desire to reform mental health Act is to decrease the number of retention but also to address the problem of over representation which is particularly acute amongst black males in general in the civil sections and particularly in forensic section groups and in prisons there is no representation among black males quite significant depending on the section.

So the act proposes to make people who are responsible for the mental health act assessments to prove that there is an immediate risk of that person committing suicide or of that person harming another person so the risk criteria will be strengthened compared to what we have now and it is hoped that it will result in fewer detentions under the mental health act.

Tom felt the detention criteria is potentially controversial and potentially risky especially given that that community services are sometimes underfunded and it is only when a person in the community develops that mental disorder becomes really acute that they need attention on the medical health act. Sometimes it happens because there just isn’t enough resources within community mental health teams to look after those people whilst in the community to provide enhanced care and support and because of the lack of this support and lack of this resource these people are allowed to deteriorate to a point when there is no other choice but to admit them medical health.

The Nearest Relative query

So this is a very complex and controversial area and perhaps Tom wanted to say a few words about the proposals where we as carers might come in on the concern of “to get rid of the role of the nearest relative”, any of us who have had relatives detained under the mental health act probably know what nearest relative means and many of us are already nearest relatives under the mental health act both the proposal is to get rid of that role and replace it with a nominated person’s role and that’s because the nearest relative cannot be chosen by the patient and could make objections to somebody acting as their nearest relative under the mental health Act but there is no choice for the patient to pick and choose the best person they think should be their nearest relative

The nearest relative currently is determined through the hierarchy of relationships especially blood relationships; infact there is a whole section in the act that describes which of your family members will be given the powers from the nurse as the nearest relative. As the nearest relative you have the power to discharge the patient from section. Under the proposals the nominated person will be nominated by the patient themselves, so some of you will be in that category in which your relative may nominate you or a suitable person to act as the nominated person.

You as carers will also have the right to be consulted on statutory care and the right to be consulted to ensure you have information that these plans have information about the patient’s wishes and preferences and you will be consulted rather than just notified. This is especially the case when it comes to transfers between hospitals and renewals and extensions of the patient’s detention or CTO (community treatment orders) and you will be able to appeal the clinical treatment decisions at the tribunal if the patient lacks the relevant capacity to do so themselves.

The appeal criteria is met if you have the power to object to the use of the community treatment or the if it is in the best interest of the patient. So these are much wider powers than what we have now, under the current system of the nominee of the nearest relative. The nominated person will be involved to a much greater degree in a variety of decision making processes.

QUESTIONS FROM MEMBERS

The SW London carers forum was reaching 2 hrs due to the interest of the speakers presentations. We had many excellent questions from members.

One member reported that MH detention is too long, very complicated. Plus the MH Act has with a lot of words that need to be explained in terms of Mental health to feel its making anything in simplified language, and more easily understood by carers and by service users, especially those who have learning difficulties. They felt the nominated catergory was a good idea since carers can take advantage of patients and patients are in a vulnerable state.

Other members were respecful and stated their views without disregarding others feedback. Another carer felt that they have a concern about putting carers in the firing line as it were. You could end up with carers having a lot of pressure put on them by their loved ones. Since a patient felt that they don’t need to take this treatment or don’t need to take this medication, don’t need to say who is actually a carer of any kind connected to the patient.

Carers should be included as the advocate, and can use their unique insight into the, their loved ones, personality, illness and to negogiating techniques of not so much to persuade, but to help them to understand the illness, help them to make better informed choices. if you’ve got this situation where carers become nominated persons, who have the have the power to say, yea or nay to the treatment, you could actually end up infringing on what could be like a human rights issue.

Another carer member stated that they know of somebody who is 91 and their loved one is having problems with alcohol and to go through the detox program. Recently they had to nominate somebody and now they tried to nominate that person that is not appropriate. The carer’s main question would be how the government put forward the idea that people would possibly spend less time in hospital or be prepared to kind of put their money into the community aside of other things so that people do not get to that stage of being so unwell that they have to be in hospital.

Joint Southwark & Lambeth MH Carers forum February 2021

Welcome to february’s Southwark & Lambeth MH carers forum update. This forum is aimed at those who care for someone with a mental illness. The forum gives families and carers a chance to understand the complexities of mental health and social care services.

For February, we had the following speakers who were kind enough to have a chance and engage with carers, even if it ended up as a friendly debate. Although the forum represents Lambeth & Southwark carers, membership is open to many carers outside those boroughs, because I feel carers should network, connect and learn from each other.

The following speakers for February were.

  • Lee Roach who is the SLaM’s Occupational Therapist and carer lead for Lambeth inpatient wards
  • Rebecca Martland who is a PhD Researcher and Physio engaging with carers on the High intensity treatment exercise
  • Sam McGavin & Sophia Stevens from Southwark Council developing Southwark’s carers partnership
  • Annette Davies who is a carer working towards developing stronger networks to carers including a BAME carer group.
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Covid-19 vaccine – Its safe and necessary

Welcome to my latest blog post by unpaid carer Matthew Mckenzie from South London. I thought to do a quick blog and do my bit regarding COVID-19 Vaccines and the importance of getting the vaccine when it is offered to you.

As you probably already know, just by looking at my photo. I am a black person. It was only in 2019 that health services were put under immense pressure due to the impact of the virus. Not just the health services, but social care, the economy….come to think about it practically everything. Up until now many unfortunately people have been taken from us because of this terrible virus. The old and young, black or white and rich or poor. No one is truely safe, especially those who high risk COVID infection jobs or those from poorer backgrounds. Those from BAME groups have a higher risk of catching the infection and are still suffering the worst outcomes. It does not help that the history of health and social care has been at odds with those from a BAME background.

Fast forward to now there has been many changes and developments. We in the UK are lucky to have access to COVID-19 Vaccines and it was not long before I was offered mine. As a carer and a black person, I was still in two minds about getting the jab.

I must admit I am in many whatsapp groups, plus facebook groups and so on. I often received emails warning about the vaccine and how black people were being tested for eradication, or how my hair would fall out (well I don’t have that much left anyway). Most people I came into contact with discussed the importance of having the Vaccine, while others did not want anything to do with it. Looking back on what we all have been through in 2020 certainly made up my mind. I have lost too many people to the virus and when I was offered the vaccine, I took it.

The day of vaccine jab, I felt a little nervous, I was not sure what to expect or if I would get an unfriendly service. I admit it was so easy to book the appointment online and the location of the vaccine centre was very easy to get to.

I was greeted by friendly staff at the GP surgery who asked appropriate questions before I was due for the vaccine. It was not a long wait and every one was friendly. I filled out a form on my health backgroud, which was also very fast and waited for my turn.

I did not see anyone being dragged into a room and given the shot, people could change their mind anytime and to be honest every one was calm and quite. As soon as I was in the nurses treatment area, the jab was so quick that I hardly noticed it. There still some worry about side effects, but its been 2 days now and apart from a sort arm I have had no side effects at all.

I felt that after all the worry, the COVID-19 vaccine is completely safe and we as black people need all the defense we can get from the virus. There is no conspiracy to wipe out the black race or put microchips in them. We won’t be made infertile, because there certainly is no serious data on clinical trials pointing to this.

It still is important to wear a mask, because no vaccine is 100% effective and so it is important to practice social distancing. I urge those from a BAME background to take the vaccine because we have suffered enough not just from the virus but the difficult roles that those from a BAME background have to do be it in the NHS or social care. I certainly urge carers also to take the vaccine because if you are caring for someone vulnerable and you catch the virus then you put the person you care for at greater risk.

We all must do our bit and protect ourselves, our community and our loved ones. The virus does not really care if your black or white, rich or poor. The virus’s job is to infect you and you have to roll that dice to hope it won’t kill you or spread to those you are trying to protect.

Do yourself a favour and take the jab.

Joint Southwark & Lambeth MH Carers forum January 2021

Welcome to the January Southwark & Lambeth joint Mental Health carer forum. The forum is aimed at carers who are caring for someone with mental illness, but they want to understand what mental health services are planning and also what carers can get access to.

For the speakers for this forum, were as follows.

Josh Simpkins – Lambeth Carers

David Meyrick – SLaM Southwark inpatient ward carer lead – Triangle of Care

Karen Persaud – Carer rep for the Royal College of Psychiatrists

Yasmin from Lambeth Black Thrive

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Lewisham Mental Health Carers forum January 2021

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

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

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

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

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Working carer research

Bridge Connections Coaching Consultancy are currently researching working carers and working parents experiences with employers when caring for dependants or loved ones with mental health challenges. My aim is to look at experiences and see where employers can increase wellbeing care, strategies and solutions to support the retainment of employee carers/parents whilst they are expected to show up for work, whether it be short-term or long-term.

It would start off with a questionnaire, then a short interview, to gather input.

From their experience, they feel there is an area where the working person providing care does not get enough individual wellbeing care, to continue to work effectively, this is an area that they are currently looking into.

You can contact Ceylan Thompson on
coachingandmentoringlifeskills@gmail.com

Well done to Alan Worthington – Triangle of Care

Welcome back to my first blog post of 2021 and I have exciting news. I have just heard some days ago carer Alan Worthington got an OBE from the New Years honours. When I found this out, I was overjoyed. If you do not know who Alan Worthington is. Alan was instrumental in the creation of The Triangle of Care.

Alan Worthington – Founder of Triangle of Care

The Triangle of Care has been around for some time, I believe 2010. The Triangle of Care is a set of policies to involve families and carers in the decisions and care of those suffering mental ill health, especially inpatient settings on mental health hospitals.

Triangle of Care Logo

With the support of national carer charity Carer’s Trust and National Mental Health Development Unit, Alan worked so hard to help implement the policy for mental health trusts.

When a mental health trust wants to sign up to the triangle of care, they need to self-assess how families and carers are involved and supported regarding mental health services. Once self assessment of services is complete then the trust can identify what needs to improve in comparison to the triangle of care’s six policies as in.

  • Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
  • Staff are “carer aware” and trained in carer engagement strategies.
  • Policy and protocols re; confidentiality and sharing information are in place.
  • Defined post(s) responsible for carers are in place.
  • A carer introduction to the service and staff is available, with a relevant range of information across the acute care pathway.
  • A range of carer support services is available.

All too often carers can be shut out of the care for their loved ones as all too often Mental Health professionals get the last word. When things go wrong, people finally ask the question “What did you ask the carer about the situation”? It is like families and carers are screaming to be involved, but something is pushing them out.

The aim is to increase involvement and communication between patient, health professional and carer. As in the past all to often there has been an imbalance of communication. There have probably been dozen’s of involvement policies from a patient or MH professionals perspective, but with the triangle of care we get the family and carer influence.

Over the years many mental health trusts have rose up to the challenge and signed up for The Triangle of Care. Below is a list of some of the Mental Health NHS trusts who have signed up and are currently working with triangle of care.

Birmingham & Solihull Mental Health NHS Foundation Trust
Bradford District Care Foundation Trust
Devon Partnership NHS Trust
Dorset Healthcare University NHS Foundation Trust
Lancashire Care NHS Foundation Trust
Leeds & York Partnership NHS Foundation Trust
Livewell South West
Pennine Care NHS Foundation Trust
South Staffordshire & Shropshire Healthcare NHS Foundation Trust
South West London and St George’s Mental Health NHS Trust
Sussex Partnership NHS Trust
West London Mental Health NHS Trust.
Camden and Islington NHS Foundation Trust.
Central and North West London NHS Foundation Trust.
Coventry and Warwickshire Partnership NHS Trust.
Cumbria Partnership NHS Foundation Trust.
Southern Healthcare.
Kent and Medway NHS and Social Care Partnership Trust
Lincolnshire Partnership NHS Foundation Trust
Mersey Care NHS Trust
Norfolk & Suffolk NHS Foundation Trust
Northumberland, Tyne and Wear NHS Foundation Trust
Nottinghamshire Healthcare NHS Foundation Trust
Oxford Health NHS Foundation Trust
Somerset Partnership NHS Foundation Trust
Surrey and Borders Partnership NHS Foundation Trust
Tees Esk and Wear Valley NHS Foundation Trust.

It is with the hard work of Alan Worthington and Carer’s Trust that the triangle of care has made such a difference in families and carer’s lives. I myself as a carer activist got involved with the triangle of care because I felt so passionate about the cause. I certainly have to thank Ruth Hannan who inspired myself and others to make a difference and help shape the Triangle of care.

I would like to finish off stating that I am excited South London & Maudsley have taken the challenge to sign up to the Triangle of care and I look forward to see how they can set an example like other trusts currently on The Triangle of Care scheme. There is still much work to do and one should never fully rest on their laurels, but congratulations to Alan for all his achievements.

We can hope the triangle of care continues to work its magic for many across the country and that carers should always be counted.

Lewisham BAME MH Carer Forum November 2020

Welcome to the November 2020 update of the Lewisham BAME carer forum. This forum is aimed at diverse carers in the borough of Lewisham, although carers and forum members from outside the borough are more than welcome to attend. When I am talking about carers, I mean unpaid carers who care for someone suffering mental illness.

For the Novemeber 2020 forum update the presenters were the following.

Professor Frank Keating – BAME community experience with the mental health system.
Dr Emily West – The challenges on Dementia, Palliative and end of life
Dr Laura Cole – Care home research
Sherone phillips – NHS England Palliative and End of Life Care

Usually all of my carer forums tend to have speakers or those who engage with carers attend locally, however due to the corona virus and social distancing, the option is now available to increase networks to wider regions. The BAME carer forum for November had a dementia and end of life theme to it.

Dr Emily West presents

First to speak was Dr Emily West from UCL Division of Psychiatry. She spoke about a project called DeCoDe-H – Improving dementia care in acute hospitals.

Emily mentioned that they are looking at ways to basically make it easier to recognize and treat discomfort in people with dementia who can’t communicate, and then work a little bit on nutrient, which is one of the studies on caring for with people with dementia. The project also looks into how can they can best support family carers. Dr Emily also spoke about another project called Endemic, which was their COVID specific project, which kind of brings the two projects together.

Dr Emily mentioned to the forum that she inherited the project from a fellow researcher I think her name is Nuriye Kupeli. Dr Emily gave credit on the amount of work researcher Nuriye did. Dr Emily has also been working with Dr Nathan Davis, who’s a senior research fellow and is also was very interested in dementia, palliative care, and decision making, which together is called “Rule of thumb interventions”.

UCL Marie Curie palliative care research department

The most well known version of this is the “stroke intervention” and how it helps you to recognize and remember a very easy way of recognizing a stroke and getting help.

Dr Emily mentioned that Dr Nathan’s work is very carer focused and he’s looked at supporting family carers of people with dementia who are at the end of life, as well as helping dementia sufferers own decision making abilities. One in 14 people over the age of 65 have dementia, which is over 850,000 people in the UK, and almost half of carers have a long standing illness or disability themselves. So you have to be particularly aware of the needs of the people that are looking after the people that have dementia.

Dr Emily mentioned 36% of carers spend over 100 hours a week caring. And as well as this general context, they have been looking at how it affects BAME community specifically. So about 3% of people with dementia, which is about 25,000 people are from BAME communities and this number is expected to double by 2026. It’s predicted at the moment that South Asian communities are going to have the highest increase in the total number of people with dementia and current research tells us that BAME communities have a lot of challenges in dealing with dementia, almost every step of the process.

It was also mentioned that there can be delays in getting diagnosed with dementia and that sometimes this can be difficult to access. We know that BAME communities find it harder to access the services and we know that people from BAME communities report poorer quality in end of life care and as found in the Marie Curie report in 2014.

A big national drive on the end of life care strategy study in 2008, found a number of related inequalities and there’s a general feeling within policy or aim within palliative care that the UCL researchers are working towards that palliative care be seen as a human rights. Its also something that’s really enshrined everyone who has the right to have a good and well provided for death and dying process. It was stressed that it’s more important than ever to address the kind of base inequalities stopping a part of the population.

Dr Emily continued that it’s also increasingly recognized that the role of families and carers and members of the public in medical and health research is invaluable. Emilies research use a lot of what are called PPI panels. So public and patient involvement. And so PPI panels helped us throughout the research process to make sure that the way that we’re communicating is appropriate, and at the right level for the people that need to access the information. And they help us to design research processes, so that we’re not asking too much, or on the other side, we’re not assuming that people can’t do things aren’t willing to do things, but they are.

Those affected on those illnesses are usually involved in steering groups, so they help to shape the research agendas. This is something that’s open to everyone. Dr Emily did point out that if anyone’s interested, she can show people how to register for these kind of things. Dr Emily was happy that people are more widely being involved regarding dementia and end of life. This is especially on those with direct knowledge of certain illnesses and situations, they can help researchers develop more knowledge on such situations, and also knowledge how things have been across the span of weeks or months or years regarding those illnesses.

Dr Emily was aware that as researchers people can inform them and maybe tell us when things are okay and when they’re not. It was mentioned that the people that carers spend every day will observe what has previously been seen as an observable and can help facilitate voices of diverse populations. Researchers can’t reach everyone but they do try to reach and involve carers, patients and networks of people. So their aim is to represent all of the voices that should be heard, when researchers doing things like making clinical guidelines, or policy decisions.

Dr Emily West moved on to talk a little bit about a recent study that they have been doing. It’s a kind of case study, that she would be really interested to hear the kind of themes that they found when they talked to people. Emily resonated with people’s experience here. she knew that there’s a lot of experience in this group, and caring for people with lots of different illnesses, lots of different social setup, social challenges. Dr Emily was really interested to hear if this kind of applies the situation that members have been living in recently, too. COVID-19 is of course has a huge effect on health and social care systems.

Dr Emily continued by saying that they have had to do some rapid response approach to care planning and decision making because hospitals have been overrun regarding the virus and GP surgeries have been locked down and everything that people relied upon as normal has changed. So systems are having to respond to changing needs all the time, just as everyone else is responding to change in government guidelines, changes in where we can and can’t go and what we can do. COVID-19 has affected older adults much more seriously and a lot of these older adults have dementia, thus carers are having to make multiple very different care decisions in this situation.

Dr Emily said that they developed a decision aid and which in practice was kind of a little booklet, and just 20 sheets of a4. They wanted to do this to help carers of people with dementia to make decisions in these very difficult and very uncertain circumstances. We know that helping people make good decisions when things are unclear, can help grief after bereavement. It can also help people to feel like they know the situation more and it can even have an effect on things like arguing with your family about Which decisions are made and which decisions are being made. So there’s a good kind of basis for why we should help people make decisions.

Researchers have looked at doing this from a combination of different data sources, they wanted to hear as many voices as possible. So they interviewed helpline staff from from assignments UK and from Marie Curie, we looked at academic literature and newspapers and things for things that have been written about already. The researchers also looked at the online forums for as long as UK as well, where people kind of go online and talk to each other. The forums are not professionally led at all, it’s just people with a common interest talking about this. Dr Emily told us about what they found from looking at the literature the publisher already exists. So this review was looking at place of care in place of death and older adults.

Dr Emily then talked about things that specifically related to BAME experiences in what exists already. So they found the decision making seemed to be key, particularly within the role of the family. It was found that generic planning initiatives didn’t work well at all and that there was a much more positive response to truly tailored decision making schemes that took into account the way that people, for example, practice religion, or day centers, or community centers or festivals and things that people went to.

In an American study that the UCL researchers looked at as part of this, there weren’t any differences between ethnic or racial groups, in terms of how much they wanted to discuss end of life options with their doctors with hospital staff, but there was a difference in how much they ended up doing. So the problem is clearly on the side of the medical world here, because people want to discuss this, but for whatever reason, they’re not getting the opportunity to do So. As well as these general findings, they found some specific things that related to people with dementia and carers. One of these was the involvement of proxy carers and decision makers. Dr Emily mentioned a lot of people at the forum were familiar with this, that when a person lacks capacity, and they can appoint or can have appointed somebody who can make decisions on on their behalf.

Professor Frank Keating presents on his research

Professor Frank Keating was to present to the carers forum on social work and mental health in the Department of Social Work at Royal Holloway, University of London.

Prof Frank talked a little bit about some of some of the things the myths around stigma and the black community. Prof Frank perfers the term black because I don’t like the word BAME as it doesn’t sit with him. plus he wanted the audience to think a little bit about empowerment and think a little bit about the role of carers in supporting an individual who’s experiencing mental health issues.

Prof Frank’s research started mainly since 2000, and has focused on a very tricky relationship between the African and Caribbean communities and mental health services, which has been his concern to try and point that out and try and find out why this relationship is so intractable.

In the report that Prof Frank did in 2002 “Breaking circles of fear” they identified that there was fear on all sides fear from services, fear from communities fear from errors, hear from families. And and that sort of seems to drive a wedge between these various groups. So his work is trying to see how can we improve? That as he carried on his work, he became more acutely aware that there’s a group of people who are really significantly disadvantaged in this. So his work then shifted from looking at the African Caribbean communities in general, to specifically focused on black men.

He continued to focus on African and Caribbean men because he found that this is a group of men who were most significantly disadvantage, and also don’t see seem to have more difficulty in relation to the recovery and more and a difficult path in terms of recovery.

So his most recent project, where Prof Frank mentioned Estella from Community Wellbeing who was involved in the project, aimed at trying to talk to black men. Prof Frank wanted to know on his argument was that there must be men who are in recovery or have recovered from from mental health issues. So he wanted to talk to African and Caribbean men who self identify as being in recovery. This was not a definition imposed on them, the men had to identify themselves as being in recovery. So in the research they talked to 30 men, and these were men in London. They also used Leeds because the funder asked them to explore other areas as well as London, But basically, what they wanted to know from the men was, what, what’s their understanding of the recovery, and they also wanted to know what support covered recovery.

What was really interesting was what the men were talking to the researchers about, first and foremost the men wanted to talk about their mental health experience, and their early life experience and this was really important for the men. Some of the men Prof Frank talked to was actually out to the interviews and this has been empowering for them, although Prof Frank was just doing his research. The thing is Prof Frank mentioned we just don’t get a chance to talk about our stories and so his message to us as carers, is really to find ways of talking to the person about their story. Because sometimes we get so concerned about their medication, we get so concerned about their support in hospital. But oftentimes people don’t get their stories heard and their stories to listen to, and find ways of getting to documenting their stories.

You can find more about Prof Frank’s work below.

Sherone Phillips – NHS England and NHS improvement palliative and end of life care program

Although Sherone works for NHS England and Improvement her main interest for engaging in the carers forum is because she is a carer. Sherone explained the difficulties of being a carer in which members were impressed and related straight away with her caring experience.

Sherone mentioned that we all know the figures, carers save the NHS and save the system a lot of money and energy, heaps of money, by the work that carers do, but carers do it because they love the people they care for and because they are there to support them.

Due to the theme of the forum Sherone spoke to us about how palliative and end of life care in the NHS as a partnership picture fits across the whole of the country. This isn’t just about London specific. The program for palliative end of life care sits around six principles about people

1 – That each person is seen as an individual.
2- Each person gets fair access to care, that there’s
3- maximizing of comfort and well being for the person who’s at end of life.
4- Their care is coordinated. So everybody involved, knows what they’re doing, who they’re talking to. And information is flows freely.
5- That all staff involved prepared to care.
6- That each community is prepared to help.

So the above are the six points that come out of the ambitions framework on life care regarding the NHS long term plan, universal personalized care comprehensive model, they ought to be six points for people. Where we work together and it’s not just about one team.

Sherone pointed out that the program includes all ages, from children who are palatable ends of life to adults and older people, everybody. Sherone also talked about NHSI (short for NHS England & Improvement) about program, to make sure that people with lived experience, so carers, people who have got a condition, which means they’re going to die soon, people who are at the end of their life with just a few months or a few weeks to live, NHSI will try their best to involve those viewpoints in what their developing. NHSI are not doing it alone they want to make sure NHSI are talking about equality, and making sure there’s minimizing or reducing and removing discrimination from all the different groups of people they can think about.

NHSI wants to focus on health inequalities from people who have got the poorest outcomes, the poorest health experiences who die sooner than they should, because they’re not getting the right support. NHSI are making sure that they are championing and pushing those discussions of those conversations through as they continue.

However what does this mean for people? What does it mean for you? What does it mean? For the people you love, what does it mean reality?

NHSI are talking about what personalized palliative and end of life care looks like. So in other words, what does it mean, at the individual level? Then the ambitions about the person seen as an individual and all those points, the six points mentioned, that this is about making sure that every stage of life, e.g the last stage of life is as good as possible, because everyone works together confidently, honestly and consistently to help the people who were important to us, including their carers. So that’s the statement, or does that mean in reality? Well, that the staff and the people that work with you, and with us and with our loved ones, have conversations at the right time and they have conversations at the right time with us, as well as with the whole the health and social care staff involved in in their choices about what they want to do, that people, including the carers have valued as active partners in the conversations.

It was exactly their findings that people want to know about what matters to them to be seen as an individual and that you have people who have good access to care and treatment at the end of their life, no matter who they are, where they live, or what their circumstances are, they should be supported with dignity, with care with compassion, and not with someone looking down their nose at you, that is a standard NHSI want people to experience.

NHSI want people to get the specialist care they need when they need it, and that their views and their preferences, what they want about the future care is known. These principles apply to care generally and support generally. So that’s the overview. As an organization that is part of the ambitious partnership, lots of different health and social care organizations are part of the ambitious partnership together with NHS England and NHS improvement, it is everyone involved in health and care, that design and talk about and plan for the services that make a difference

Dr Laura Cole presents on Care home research

Dr Laura from Kings College London wanted to tell carers at the forum about a study that they are conducting at the moment. Dr Laura is looking at residential respite for people with dementia and their carers. Basically Dr Laura meant a short stay in a care home. So not when somebody lives at home, and then they just have a breaks and maybe they spend a week or two or maybe more, but they come back home so they don’t permanently stay in a residential respite in a care home.

So the researchers know that respite may be quite beneficial for some people, because it provides a change of scenery, it provides the carer with a little break, and then the hope is that with that brake, the carer can continue caring for longer, and obviously, they’re able to do the things that they want to do, they can go on holiday, but also it is kind of a way of building resilience and getting strength back. Sometimes it can be something to look forward to as well. So it’s case of, I’ve just got a few more weeks to go and then I’m gonna got this lovely thing to look forward to or a break. And, and it can be beneficial for people living with dementia as well and as they have a break.

That is the reason for what the researchers are trying to do as they know that many people with dementia and their carers don’t access this service. So what they would like to do is interview people who have had the service, and then interview people who also have declined the service so that the reseachers can marry the two up and see what the the pros and the cons of residential respite are. Dr Laura had planned to do all this pre COVID so they were going to interview people in their own homes, and from from these two groups, so obviously, they still continuing with that, but they are doing it using zoom, over the telephone, though. They want to interview people living with dementia, and family carers about their experiences.

Lewisham Mental Health Carers forum October 2020

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

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

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

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

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

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

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

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

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

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

QUESTIONS FROM THE CARER MEMBERS

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

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

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

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

CQC PRESENTS UPDATES

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

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

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

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

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

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

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

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

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

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

HEALTHWATCH LEWISHAM ENGAGES WITH CARER MEMBERS

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

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

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

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

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

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

CARERS FEEDBACK TO HEALTHWATCH LEWISHAM.

Many of the group members fedback experiences on the following.

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

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