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.

Sharing your experience of Lewisham health and social care services

When I was caring I felt that the services my mother used impacted on my caring experience. I feel its vital carers do the same and feedback about health and social care services.

Are you a Lewisham resident? Have you been using health and social care services during the pandemic, whether it’s digitally or face to face? Are you passionate about improving health and social care services for the community?  

I encourage you to leave any feedback, positive or negative, about your experiences (it is ANONYMOUS). This can be about your local pharmacy, GP, hospital, optician, dentist or community health, mental health, and social care services. 

Share your feedback here: https://www.surveymonkey.co.uk/r/8B8Z3MZ 

You might also consider sharing it with one or two of your friends and family members?

More information:

At Healthwatch Lewisham they are continually wanting to hear and learn from patients, carers and relatives about their experiences with health and social care services in Lewisham. This has changed slightly during COVID-19, however, to ensure patients have a mechanism for leaving feedback and helping to improve services for the community, we have created a Patient Experience Survey. 

Your feedback allows Healthwatch Lewisham to see what is going well for Lewisham residents and what can be improved. 

To learn more about Healthwatch Lewisham’s current work or to leave feedback via their Digital Feedback Centre on their website, please visit www.healthwatchlewisham.co.uk

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.

Carers Rights day 2020

Matthew Mckenzie on Carers Rights

Welcome to my blog site that focuses on mental health carers. What I mean by that is the site raises awareness of carers who are caring for someone suffering mental ill health.

For Carers Rights day 2020. I decided to do a blog post to keep that awareness going. The first website I visited was CarersUK website on Carers Rights day. What I found was really interesting.

Did you know that research released for Carers Rights Day 2020 reveals unpaid carers save UK state £530 million every day of the pandemic?

If you want to see the video version of this blog post then see the video below.

Carers rights day video by Matthew Mckenzie

Although this blog post is a little late for carers rights day, I felt that the event was just too important to miss and I wanted to have my say for carers rights day 2020.

If you already know me, then you know that I am a strong advocator for carers rights.

If you do not know me, then let me introduce myself. My name is Matthew Mckenzie from the borough of Lewisham and I have a blogsite, video channel, carers newsletter, podcasts and now event a book.

I also have a strong social media presence where I advertise my carer’s groups, which has been going many years now. The things that have inspired me to do all the above has been down to caring for my mother who suffered mental illness close to 18 years, but during that time I have worked hard to engage with carers and mental health systems.

Back to carer’s rights day 2020. It is one of the special events that focuses on carers doing the hard work of caring for a loved one either in the family, as a friend or neighbour.

The theme for carers rights day is “Know your rights“. On carer’s rights day, I did a talk at my local carers centre regarding carer’s rights.

Below is a list carers should take note of when pursuing their carer’s rights. If you want to know more in-depth details about Carers Rights, then please watch my video.

Ability to access and improve care for the ‘cared for’ in day-to-day life
Domestic, family, and personal relationships
Carer recognition/support in work, education, training or recreation
Personal dignity (including treatment of the carer with respect)
Physical and mental health & emotional well-being
Protection from abuse & neglect
Social & economic well-being
Suitability of living accommodation
The individual’s contribution to society.

Violence in informal caregiving relationships – Research

Researcher Emilie Wildman is now conducting research into exploring the experiences of informal carers of adults living with mental health problems, who have experienced violence from the person they care for.

If you are a carer who has experienced this and is interested in getting involved please see the poster below.

You can contact the researcher on the following details.

Researcher: Emilie Wildman
Tel: 07737 714 873
Email: emilie.wildman@kcl.ac.uk

Joint Southwark & Lambeth MH Carers forum October 2020

Here is the brief update of the October Joint Southwark & Lambeth Mental Health carer forum. This is one of the five carer groups that I run per month. The carer forum is an engagement & empowerment group for carers to learn more about mental health services and at least query what is on offer.

SOUTHWARK HEALTHWATCH UPDATE

As usualy the group is supported by the local mental health trust South London & Maudsley, we also had southwark healthwatch in attendance as well as both Southwark Carers and also Lambeth Carers. Lastly both the engagement leads of Lambeth & Southwark CCG were to be in attendance, although only Southwark CCG could make it, due to Zoom blocking Lambeth CCG. It must be noted that the 6 CCGs are now merged into NHS southeast London clinical commissioning group, so its not always clear who is from what (more on that later).

The forum was co-chaired by carers Ann Morgan (Lambeth) and Annette Davis (Southwark). Our first update was from Southwark Healthwatch who are interested in the experience of those waiting for hospital treatments, like for surgery or chemotherapy, anything in a hospital. Southwark Healthwatch are doing that through phone interviews or online chats in a group, whichever people feel the most comfortable with. They just want to hear from as many people about how waiting times in hospital has impacted them, and what could be improved. Southwark Healthwatch are also interested in how the waiting times affect mental health and I suspect on how badly covid-19 is affecting waiting times in hospitals.

Members are very interested to see the outcome on feedback from Kings Hospital trust and Guys & St Thomas hospital trust on waiting times.

LAMBETH CARERS UPDATE

Ann morgan then introduce Josh Simpkins from Carers Hub Lambeth to talk more about the Lambeth Carers Card, which came from the Lambeth carer’s strategy. Josh mentioned that they made a recording of the launch, which is on their website, YouTube channel and facebook. Although at the joint forum he was going to do a bit of an introduction and background on the scheme itself.

The card scheme itself helps with emergency planning for carers, which is especially prevalent today due to the covid-19 situation. Josh also talked about how the schemes template on how a carer can use the template as a process to quickly make use of resources if the usual carer resources were unaccessible.

Josh talked more about the carer’s strategy, but members are hoping to hear from Polly on any developments for carers in Lambeth. There is still a hint of jelously from myself as I feel Lewisham has a way to catch up in regards to a carers strategy, what impressed me futher is the strategy is taking shape even during covid-19 as the Lambeth carers care helps protect against dwindling resources. A governor at the forum actually asked if the card was either Southwark and or Lewisham, but unfortunately its only for carers in Lambeth. We can only hope the other boroughs can emulate the successes for carers in Lambeth.

Ann Morgan queried if there will be a card for young carers, which was an excellent question since young carers can be forgotten when it comes to developments and projects. I personally think due to the lack of young carer empowerment groups, its harder for young carers to get a voice, so its often older carers who may try and speak up for young carers. Josh from Lambeth carers hub mentioned they were brain storming ideas to help young carers in Lambeth and so we should watch this space.

Josh did mention another thing regarding young carers is that when he went in with, with his colleagues into Lambeth schools. They found that young carers wanted space to get away from their peers and connect with other young carers in a different space, rather than just the other pupils in the school. There was more to this than connection purposes, but it certainly was a start on the needs of young carers. Josh mentioned there certainly was discrimination on young carers at school, which many at the joint forum were aware of.

It was also mentioned from the Southwark Carers inpatient lead that what strikes them is that the carers card links everything together. Although there will be times when obviously, the carer is overloaded and might not know where to look, but its really impressive as the Lambeth carers card puts everything together. He hopes we could do something similar in southwark because he feels there are lots of pockets where carers cannot find resources, so it would be great to get everything under one avenue.

SOUTHWARK CCG – South East London Clinical Commissioning Group UPDATE

Next we had Bola Olatunde from the Southwark CCG group engage with carers on how they were working to support mental health and carers in the 2 boroughs. Bola first explained that there is no Southwark CCG anymore. They became NHS SE London CCG from the 1st of April 2020. So they were Southwark CCG up until the 31st of March, then six independent CCGs came together and then joined as one NHS southeast London CCG from the first of April. Those were Southwark CCG, Lambeth CCG, Lewisham CCG, Greenwich CCG, Bromley CCG and Bexley CCG. As of the summer, the South East London Clinical Commissioning Group has been heavily supporting the carers groups since I am active in Lewisham, Greenwich, Southwark & Lambeth, although there are plans to expand BAME carers in boroughs I am not active in, depends on my time.

Bola explained the to carer forum that they are now borough teams, but we don’t have six CCGs anymore. So they are the southeast London CCG. Bola was here to just to let us know that the team is still here and if any updates or developments are taking place then they will seek to engage with us. Bola posted some information in the chat box of ZOOM to raise awareness for the flu vaccination if people are eligible and to to remind them to book their appointments with a GP practice or local pharmacy.

There were a lot of questions from the group members on the nature of the new CCG structure and who does what within the new development.

SOUTHWARK CARERS UPDATE

We had an update from Mary Jacob who is the chair of trustees from Southwark Carers and also a carer, she updated the joint Southwark & Lambeth carers forum on what Southwark Carers is doing. Mary mentioned that at the moment, Southwark Carers at looking at their premises and how they are going to continue giving the best services that they can under the restricted funding they are having. Southwark carers still need to get confirmation with Southwark about how much funding they are to receive and when they are going to be funded till.

Southwark carers

Southwark carers are at least very grateful for the support they are getting so far. Currently Southwark carers are continuing with their services to all ranges of carers in the borough. Southwark carers are in partnership with a fair shares Co-Op, so they are still providing food parcels to the carers who win the most who are in the most need. Southwark carers are also still providing online activities, including exercise classes, salsa classes and also a film club. The last film that was shown during Black History Month, was the film Black Panther. The Film Club not only provides the film a source of entertainment and social contact for carers.

They are also going to continue with their cultural events right the way through the year, not just in October, they have a program of events that’s now being finalized, including sharing different recipes from different countries and different festivals including celebrating Diwali, celebrating Hanukkah, celebrating all the different cultural festivals.

Southwark carers are also going to have mindfulness classes online and they are looking at how to reach carers that may be find it difficult to get onto zoom.

Another Southwark Carer trustee present at the Joint Southwark & Lambeth forum mentioned that lots of carers aren’t IT proficient and it is documented that carers are to face real challenges in regards to finding time for self care.

So with self care being much of a priority and looking at the 360 overview of carers responsibilities, southwark carers are having to look at how they are revising their service to actually be more accessible in light of covid-19.

UPDATE FROM SOUTHWARK INPATIENT CARERS LEAD

We then had an update from David Meyrick the inpatient ward carer lead for Southwark under South London & Maudsley. Currently he mentioned they have taken steps regarding wards and have revisiting them such distance measures. They have found that there was different arrangements across the wards that were visited and they were just concerned that might be a little bit inconsistent, especially if you had a loved one readmitted and found it difficult to visit the ward. So SLaM have taken the steps forwards across the five wards that obviously needs to be booked in this way, it makes things a lot safer. So the staff can facilitate two visits a time but in the same bubble, is keep it safe that way. David thinks it’s been working well, so far.

David is aware that some inpatient wards are reluctant to do this, because its not always possible to just spontaneously support the patient and the visitor. however he feels it’s just in the best interest of all. So crisis support is working well. Plus they have set up virtual cave surgeries towards information provision, inside work, and, and running cameras to support carers and patients. They have a monthly, a weekly support group that runs and I’m sure and that’s providing emotional support and peer support that carers need.

Annette co-chair of the joint forum and carer herself mentioned that since she started working with David carers attend the group regularly every week. Annette felt she can actually see the difference and what the most significant things for carers is they want to be heard.

UPDATE FROM LAMBETH HEALTHWATCH

Lastly we had an update from Lambeth Healthwatch in what they have been doing since the last meeting.

Mental health of young people

Transition of young people with mental health needs and learning disability. We are looking into the transition pathway for three cohorts of young people: young people known to Children and Adolescents Mental Health Services (CAMHS); young people who have complex needs known to SEN team; and young people who have social and emotional issues not meeting the criteria for secondary care or not accessing service. We will interview young people, their carers/parents, and health and social care professionals. We will also hold focus group discussions with different groups of young people.

Young people’s mental health and emotional wellbeing needs assessemnt – We are in the task and finish group of Lambeth Made. The group will investigate and analyse mental health needs of young people in Lambeth. This assessment will go beyond reviewing existing need but will also look at the protective and risk factors that influence mental health, modelled on a life course approach from maternity through to young adulthood. The findings of this assessment will feed into an overarching strategy to transform the offer of mental health and emotional wellbeing support we provide to CYP and their families; focusing on promotion and prevention, right through to specialist provision, seeking to uncover and address any unmet need. This needs assessment will replace the joint needs assessment carried out by Lambeth and Southwark Public Health Team in 2013/14 and will be informed by The Young Lambeth Emotional Wellbeing and Mental Health Strategy and Plan 2015-20.

Campaigns regarding world mental health day

Lambeth Healthwatch hosted an event to mark World Mental Health Day 2020 on 7th October which was well attended. They will be hosting more of these regular online events which are open for anyone to attend.

There will be a Webinar next week on Wednesday 4th to mark National Stress Awareness Day.

I asked if they was any updates from Lambeth HW MH lead.

Lambeth Healthwatch responded that there is ongoing work with Lambeth Hospital to support staff and service users with the move to DBH. Planning some remote engagement sessions in November. The sessions will be aimed at understanding the views of hospital staff and service users on the development of Lambeth Hospital.

Lambeth Healthwatch are also involved in several projects looking at maternal mental health and the impact of Covid pandemic. In particular, they are working with King’s College Hospital and partners from different organisations to access women who are expecting or have given birth during the pandemic.

Lambeth Healthwatch are supporting the Adults Safeguarding Board in planning a workshop to mark Adult Safeguarding Week 2020 on 19th November 2020. The event’s theme is Safeguarding in our Community and will explore how we assess safeguarding issues in a digital world.

The last update from Lambeth Healthwatch is that they are supporting the Care Quality Commission to promote its campaign. They will interview six service users (2 people with learning disability, 2 older people, and 2 carers) from which they will write case studies and record a short video of each service user’s experience. They will also ascertain the success of the campaign after publishing the videos.

This is the October update from my Joint Southwark & Lambeth MH carers forum. If you are caring for someone with mental ill health in Lambeth or Southwark, check out the next dates of this carer forum at the following page.

https://caringmindblog.com/mental-health-events/

Lewisham BAME MH Carer Forum October 2020

Welcome to the October edition of the Lewisham BAME Mental Health carer forum. Its a bit of a mouthful of a forum, but this is the only BAME carer forum I have out of the other 5 carer groups I run.

For the October carer forum, Carers UK were kind enough to lend their Policy and Public Affairs person to the group. Ruby Peacock presented on what Carers UK have been doing for carers up till the coronavirus situation. We were also joined by Dr Siobhan O’Dwyer who is a Senior Lecturer in Ageing & Family Care at the University of Exeter. Dr Siobhan was joined by Artist Leo Jamelli who is working with Dr Siobhan to raise the profile of carers using art. More on that later.

For the forum we were joined by the usual carer members and some newer members, also in attendance was Debora Mo who is Greenwich CCG engagement lead. We were also joined by Nathan Lewis the Community Outreach Manager for Samaritans Lewisham, Greenwich & Southwark Branch. In attendance was Sophie the patient engagement officer from Healthwatch Lewisham who was the third and final speaker at the forum. We were also joined by Lisa Fannon who works for Lewisham’s Public Health and is very interested in how health and mental health is affecting Lewisham’s community especially when it comes to poverty. We were also joined by a governor from Guys and St Thomas NHS Trust who engages with residents of Lewisham, Wandsworth, Westiminister, Southwark & Lambeth on health matters.

UPDATE FROM RUBY PEACOCK.

Up first to speak was ruby from Carers UK. If you do not know already CarersUK is a leading national charity fighting on behalf of the 6 million+ unpaid carers. Ruby kindly attended the forum to update members on CarersUK latest intiatives.

One of the projects that CarersUK have run is called “Entitled harmony voices”, which looks at the experiences of BAME Carers. So as a kind of starting point, CarersUK not only examines the situation of carers, but also BAME carers from the 2011 census. Since the census is fairly old, Ruby admitted that some of the numbers she is presenting on is a bit out of date. She is going to try and talk as well about a little bit of the research CarersUK has done during covid-19.

CarersUK did some research for Carers Week this year looking at the number of carers during the pandemic, not only has the number of carers increased more generally in the population, just because of the aging population, but also because our health and social care systems have been underfunded.

Ruby pointed out that there is even more pressure on family carers and how our demographic will generally have changed. There has also been an increase in the number of carers more generally and she estimates to be about 17 % of the population that being 9.4 million people.

She also found 4.5 million people became carers during COVID-19, because there were people who were shielding who weren’t necessarily needing care for. There were also people who had COVID to add to the required care afterwards.

Ruby would estimate rather than the being half a million BAME carers, we would say it was closer to about 1.3 million carers at the moment. And so in terms of kind of what the demographics look like, there is a spread about the amount of carer that people have provided. So for the majority of people whether they are BAME carers or the general carer population are providing kind of zero to 19 hours cqre, there are the lower levels, about 15% of carers provide between 20 and 49 hours of care, and about 21% provide over 60 hours, which is really in significantly higher numbers. Ruby estimated that about 10% of the BAME population are caring around the clock.

Ruby continued that there are a couple of things that we know about the kind of carer population, she was going to talk a little bit about what we know in terms of experienced BAME carers more generally.

Ruby knows that carers are often in financial difficulty. And not only does caring come with additional costs, whether that additional heating costs or fuel because of carers transporting people to places in different ways, but also within the house, and with that paid for services.

CarersUK are also seeing that some services that used to be provided arent provided any more. So in the end the carer and the person being cared for or having are to cover costs out of their own money. This is often confounded by the fact that often juggling work and care can be really difficult. So we know that there’s about 1.2 million people who are caring who are in financial difficulties and we would classify that as inequality. Ruby mentioned that one of their ongoing campaigns is to kind of raise carers allowance, which we think is the lowest benefit as of its time, which she feels is just simply unacceptable in terms of providing that support for carers needs.

Ruby reminded us that carers struggled to juggle, work and care, and they found in research that 600 people a day give up work to provide care. It was mentioned that during the COVID, CarersUK have seen the increases being a real pressure on people being able to manage their caring responsibility alongside local services either stopped, or severely reduced.

There are also a large number of people shielding, and although some carers could access a furlough scheme it led to some really different experiences with their employees about what they were and what they thought what they needed.

Ruby pointed out that carers are often more likely to be lonely and that part of that is because it’s really difficult to talk about your experiences with different people. It can be really difficult to access breaks, which means you don’t have the time to be able to invest in your relationship, plus carers can be in financial difficulties, which means you can’t access the same sorts of activities that the other people can.

Ruby spoke at length of the other difficulties carers were facing, a good point was on the real emotional impact that people were on under in the month of April. One of the things that CarersUK found was that the majority of carers and 60% of BAME carers said they felt like they were reaching a breaking point. She felt that one of the things that it’s really important is that we don’t put people in the same situation they were in April. It was mentioned that not only were people incredibly stressed about caring safety for themselves, and keeping themselves and the person they care for safe, but they were also taking on extraordinary hours and CarersUK think its not possible for people to care for long period of time.

QUESTIONS FROM MEMBERS

One of the members thanked Ruby for her presentation, she felt a lot of it resonates with her personally and she would like to mention a couple of things that definitely impacted her during COVID. The carer member mentioned she was caring at a distance and she was very glad that Ruby mentioned the situations long distance carers face.

The carer mentioned during COVID, the person she is caring for had a fall and that he also went out well. He was taken to the hospital, by ambulance and so on. And because he had also has some underlying health issues, the hospital decided to check him out thoroughly. And lots of appointments were made some early in the morning. Plus the fact that he has a special needs, So she needed to be with him as his carer at the hospital during these appointments, to be able to hear what the consultants are saying to be able to ask questions, to give them his history.

Ruby responded that we don’t think the NHS does enough to recognize the role of carers and we’re also incredibly concerned about the change to government policies on hospital discharge, which dont provide and don’t suggest that there should be a carers assessment as part of the discharge. It is important to know who the family or who else is in the home and who will be providing that care. There is still a long way to go for Acute NHS hospitals who are slow to be carer aware.

Another question was on older adult carers. The carer was concerned that when Ruby sends off information to the government regarding younger carers or adult carers. He feels those carers will get support, but older carers will be left out. He was wondering if carer data was broken down into 3 categories as in younger carers, adult carers and older adult carers. Ruby mentioned CarersUK focuses on adult carers, but young carers tend to be the focus of another national carer charity, that being CarersTrust. I suspect AgeUK might focus more on older adult carers. Ruby also mentioned breaking down the 6 million carers into categories would be a massive task in itself.

Another carer wanted to expand on the issue of completing online surveys. She wanted to talk about access to digital services, and or probably people’s capacity to actually complete forms online. She asked if there something about the care coordinator sitting down and having some way of completing that form on behalf of the individual. Because whereas we used to be sitting in an office, and then somebody can complete it for you. And that was fine. but we’re now in this digital new way of working, not everybody has access to being on zoom, not everybody has access to the internet and not everybody has access to be able to print an application or form of an insult

Another member raised the point that the problem that is facing their NHS trust is that because the black and Asian people are so used to the inequalities within the services. They’re not even interested in filling out the forms to be quite honest. So we now need to find a way where there is less talking and more action.

Another carer gave an example of her experience as a long distance carer, while another carer member felt BAME people were being put in a box, but not categorised enough from being different from service users. There was still a lack and understanding of the needs of BAME carers.

With that I thanked Ruby for her time and thanked her for representing caresUK and coming to engage with BAME carers. I mentioned that I hoped that we can hear from CarersUK in the new year and continue relations with the good work CarersUK does in advocating and raising the carers agenda.

NEW PROJECT FROM EXETER UNIVERSITY – Dr Siobhan O’Dwyer presents

Dr Sioban wanted to talk about what they did around hearing from carers experience of COVID. They had a group of carers who they gathered right at the beginning of lockdown and they interviewed them every week for 12 weeks. So every week between April and June they heard about carers experiences. They are also going to go back in January as part of that research and that they have working really closely with different government departments, including the department of health and social care, department of Work and Pensions, public health England, CarersUK and also The House of Lords.

Dr Sioban wants to put together a briefing to each of those government departments and the various charities so that they have that information. They felt they done quite well with that project in terms of helping policy makers and and charities and local authorities understand the experiences of carers.

What she feels she hasn’t done too well is to actually engage the community and help the community see what a brilliant job carers have been doing through this time, and also have tough they’ve been doing it. And so in order to sort of shift to that focus in and work with the community, she recently got some funding from the council to do some large scale art installations to debate the challenges that Carer’s face during this time, but also to celebrate the amazing work carers do and the incredible bonds carer work so hard for the ‘cared for’

One of the things she really wants to work towards is to represent and celebrate BAME carers and carers from ethnic minorities, because she recognizes that they’re not represented in a lot of the research on carers or on a lot of the community discussions.

ARTIST LEO JAMELI PRESENTS TO THE FORUM

Lee mentioned in 2019 where he worked with Dr Catriona Mckenzie and Dr Sioban, the project they worked upon was an art projection of his own experiences of care. The art image was of his mother taking care of his father. The image was hand drawn and shows the human endeavor to continue to care. The art projection is called “the Invisible Carer”, which is a large-scale light projection designed to celebrate the often unheralded and crucial role of family carers.

Leo mentioned how he felt to portray mother’s experiences of care, but just in a small kind of loop. So it’s this idea of she was having to carry him instead of losing him, through also, with kind of medical health decline in slipping through her hands, but then finding the strength that most carers find

You can see the art projection in the link below.

The invisible carer site

what Leo hopes to do these projections is to bring much more public awareness about care, because it seems generally in health services, everyone does a good job, but it seems like kind of social care the poor cousin of the NHS. Leo feels it doesn’t seem to get as much public attention it deserves.

Leo explained more of the visual representation of the art projection and how large the scale of the projection. He mentioned if you look in the back distance, you can see someone in a restaurant, so it kind of gives you the idea of the scale as they are about three to two story is high. The focus for this year is to get a projection of a BAME carer from London to be involved in the new art work, which members were very interested in taking part.

CARER MEMBER RESPONSES

One of the members was interested on how long is this project for? because its possible that covid-19 lockdowns can affect the funding of the project. It was however stated that funding has already been secured for the project, only the weather could cause any disruptions when the artwork is projected on to a building. The aim is to project the artwork in Southwark.

HEALTHWATCH LEWISHAM ENGAGEMENT

Next to engage the BAME carers forum was Sophie from Healthwatch Lewisham. She is the patient experience officer for the organisation. The aim for her was to speak to the group directly to get feedback from health and social care services.

Sophie explained more on healthwatch do. Basically Healtwatch is the patients champion for people who use health and social care services, so that can be carers and relatives and patient service users. Basically Healthwatch takes feedback on hospitals, GPS, opticians, dentists, community health and they basically listen to what’s going well, what could be being done. At the end of every quarter, healthwatch will analyze all that feedback, and then produce reports which is passed on to the people who have the power to make those changes happen.

Many carers feed back about pharmacy issues and queries about hospitals. It was empowering to heave healthwatch engage with carers and I hope we can continue to have engagement from such a prominent organisation.

This concludes our update from the October BAME carers forum. I also want to note that I have released a carers news item. To subscribe click on the link below and select subscribe to get updates of the latest carer news.

https://mailchi.mp/f11c6f942a2e/carer-news-from-a-caring-mind

We Coproduce October forum 2020 – A Caring Mind book Section

If you have been a regular to visiting my blogsite then I am sure you have seen a few blog posts about the fantastic mental health forum over in West London. Taken from their website “We Coproduce CIC is an award winning social consultancy, owned and run by local people for people who care about the future of health care in the UK. They are commissioned to work with local communities to coproduce better and braver solutions to health and social care challenges.”

We Coproduce do a lot more than run their forums over in Hammersmith & Fulham, Hounslow and Ealing. Over many years they have worked closely with the mental health trust West London NHS trust on improving mental health for the community. For the October forum facilitated by both Jane McGrath and Natalie Louise there were many exciting speakers.

One of the speakers was myself where I talked about my new book “A Caring Mind”. You can see the talk I gave from the video below.

Matthew Mckenzie speaks about his new book – A Caring Mind

The book “A Caring Mind” shines the spotlight on the carer’s experience when caring for someone with a mental illness. Often carers stand in the background and carry on supporting their loved ones because of duty, love and just being there.

I felt it is about time I put my thoughts down in a book and We-Coproduce along with West London NHS Trust supported the work I was doing.

You can get hold of my book on Amazon either in Paperback or Ebook.