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.
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.
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.
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”.
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 theMarie 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.
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.
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 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.
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.
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.
Welcome to September’s 2020 update of the Lewisham Mental Health carer forum. The forum is run via Zoom to protect attendees from the risk of Corona Virus. The forum usually runs from Carers Lewisham centre, but is now online. The carer forum gives carers in the borough a chance to engage with Mental Health and Local authority services. It is a form of empowerment for carers and a way to gain insight and knowledge.
The forum also gives carers a chance to work together with health providers as co-production often gets raised. For the month of September we had a special “Carer Peer support” event, where many other carers were invited from my other carer groups, especially some from Greenwich who were wondering what does it mean when a mental health trusts champions peer support. Carer peer support has a different focus though, as it is aimed at families and carers. It also must be mentioned that peer support does not have to be a service that comes from the mental health trust, but carers themselves can also practice it.
We were joined by Peer speciallist and carer Donald robertson from sussex NHS partnership over in Brighton, we were also joined by Shelagh Musgrave from Birmingham and Soulihil NHS trust. Both were at the forum to educate and explain the importance of carer peer support at NHS trusts and services. We were also joined by Rachel Ellis who is South London & Maudsley NHS deputy head of inclusion and lead for peer work.
As usual the forum was supported by SLaM Jane Lyons who is the Croydon & Lewisham Involvement lead, however our CQC member could not make the forum today and has requested an update. Some of the things mentioned by the other NHS trusts peer leads should be of an interest to NHS England as there were views regarding peer support pilots across 3 NHS sites.
Sussex Partnership NHS Foundation Trust Carer peer support
Donald Robertson spoke at length of his role over at Sussex MH NHS Trust. He started off as a carer who cared for his wife for many years before slowly becoming more involved as peer specialist at his mental health trust. He now works within the NHS. So he feels like he can inhabit all three corners of the triangle of care in different ways. Due to being a carer, going through difficult times and being a health professional. Donald was trained as a social worker based on his own lived experience.
Donald mentioned peer support is about using his lived experience as a resource. It’s about changing things and how he wouldn’t go back to some of the times his been through, he wouldn’t even give his worst enemy back to some of those times he had, but his glad it that happened, because it made him a stronger person for today. Don pointed out peer working is a bit special. and it’s not just about having the the lived experience, it’s about how you use it. Peer support is how you support somebody with without having to be competing to see who has got the worse symptoms.
HOW PEER SUPPORT WORKS
Donald usually meets or chats to carers reffered to the trusts peer support via video link or phone and asks them “What would be helpful for you” “We can talk regularly as one to one around 15 minutes at a time. He would then confirm that the peer support can be flexible for carers to engage with him or donald could even be in contact with carers by text.
Donald spoke about the carers groups. One of the main groups actually existed before the COVID situation. Don mentioned that he sort od reshaped the carers group and things started settling in their place. The peer group has good numbers where 10 to 16 carers attend. So the peer group is really became very successful. Don asked that people to come to that carers peer group first or to call because he understands that when a carer is struggling? especially if its isolation or if they feel like they are the only one in such situation. Then being in the group where people just get it and understand where you’re coming from almost without having to say anything.
Don was glad to see veteran carers take the lead and set up a workshop to showcase the aim of peer support and the peer support group. There were challenges and struggles as other means to connect were difficult, especially connecting through social media or trying to work out how carers connected through whatsapp, plus NHS England set up something that is aimed to protect people’s anonymity which is very important, but also reduces the chance for carers to connect with each other.
It was also reported that when COVID-19 arrived around spring time, it shook peer support up a bit, because Don was not fully comfortable providing peer support online. This was especially when someone is telling you a difficult and emotional story only for the connection to drop, plus it misses several aspects of peer support including reading body language and giving others the chance to speak. Donald wanted to make the most of his time as being part of the NHS team when it comes to providing carer peer support, he did not want to duplicate what was provided there already and wanted to focus on giving more options for carers.
DESCRIPTION OF CARER PEER PATHWAY
I then took the oppertunity to ask Donald Robertson about his NHS Trusts flow chat regarding carer peer support. This was one way carers can examine how a mental health trust can provide support without having to read into any difficult jargon. It also gives an idea that the NHS trust is interested in carers and has a pathway on carers.
Donald told the forum that the chart is focused on carers supporting people having a first episode of psychosis, it’s about the evidence. So if you put some more intensive support in for some carers, that will mean that they will not end up in a long term service user. So the client service user is taken on and our standard assessment period is about six weeks.
There’s a lot of getting to know somebody before it’s completely clear, whether it is psychosis, or if there’s other factors, and Don actually gets involved earlier to help signpost to other services. Still, the lead practitioner identifies the carers and if the carer does not want support so close to the NHS Team then there is always independant carer support at Brighton’s carers hub. The mental health support team will always endeavor to keep the carer involved as much as they can.
You can find out more about Sussex NHS Partnership below.
I then opened up the forum for carer members to ask questions regarding carer peer support at Sussex mental health NHS partnership.
A question on Older adults was of interest to a carer member. He was interested on what information did Donald give out the to older adult carers who are caring for someone with dementia. The carer was wondering if the pathways were more of a one shoe fits all policy. The carer member was also interested in sigma from the BAME community over in Brighton and wondered if Donald had any connection to that group.
Donald responded that it’s important to avoid the one size fits all policy. He engages with carers more as a person centered approach. So Donald is asking what the person in front of me needs. In the Services Donald works in it is all about people who have experience psychosis for the first time, traditionally that’s dominated by people in their late teens or 20s. So there’s a lot of work to be done about helping carers to acknowledge that they are carers. Donald feels his stereotype of a carer is somebody who is helping someone getting dressed, and maybe spoon feeds them, but he himself has never done that. His caring was much more about emotional support. And, rather than kind of fairly practical stuff even though they’re both important, but they are quite different.
I mentioned to the carer that since Sussex NHS partnership was a large trust that maybe Donald was not involved in the dementia service or BAME engagement, but there can always be a forum where we examine how other trusts engage with the BAME community.
Another carer member wanted to make a statement rather than a question, she felt so much resonates with her on what Donald spoke about. She pointed out 3 things, the First point was on how Donald mentioned the typical age group, that someone gets psychosis and some of the other illnesses or some of the other mental health illnesses. Her son fell ill when he was in his late teens. She still is not sure that her son’s illness has been fully identified and what caused it. Her Second statement was how it affected her so much that she couldn’t move on with her life, it was very difficult for her to move on.
Her Third and last statement was on how she was assisting my brother and even though her mother had 10 of us, she ended having to be the one taking on the caring for her brother, while most of the other members of the family want to know what’s going on with him they are not offering to help.
Donald responded and agreed that when one of the carers who was in that situation he remembered them telling him to “help them is help the people around me to not come through me” Donald remembered that he did a work with about four or five different people from that family. He felt it’s quite natural, because people are scared, it’s easier to get it second hand in some ways, because the main carer is that kind of buffer.
Another carer raised the point about my recently released book and if the CCG would take the oppertunity to help promote the book due to my high profile of raising carer awareness. A recent update is SLaM has purchased my book to the library under their carer’s section, although the carer mentioned the book should be standard reading on training staff about carer identity.
Birmingham and Soulihil NHS Trust carer peer support
The forum was given a chance to hear from another mental health trust on carer peer support. We heard from Shelagh Musgrave who is the Family Carer Peer Support Worker on the Women’s Secure Blended Service Team.
She started in her role nine months ago, but she was honest that there are challenges as she felt there are still NHS collegues who do not embrace family/carer involvement in getting peer support. She felt there can be a lack of communication to the carer and it needs to happen more often. This is particularly a problem when confidentiality continues to block carer involvement and then causes families to back out of recieving any other means of support.
She mentioned it can also be quite challenging to encourage colleagues at the NHS to understand that actually families and carers have shared information with them so then it’s no longer confidential. So if they have shared something with us and I tried to speak with colleagues about it, I surely can talk about it to them because it isn’t confidential anymore. Yet, this is not often the case as if something keeps blocking that triangle of care regarding families and carers.
Another issue with confidentiality is Shelagh’s role is actually with a charity rather than embedded with the NHS trust and even then confidentiality can sometimes block her off from getting involved or finding out what is going on. For example because she is peer support worker she might have picked up on a self harm incident and would need to update the family on what could be happening. She felt it’s really hard to get information as a carer and they just have to sit with it. It is like the carer is left wondering what’s happened this time.
The reality is that the carer be informed of these incidents, because it’s relevant to the person that cares for them, but unfortunately the culture of care is that carer may get shut out, which leads to impact or the trauma that might be taking place with the family and carer is left, as it always has been.
Shelagh mentioned that the NHS Trust actually have a family/carer pathway modeled within the trust, although it’s in the very early days. Still there is a problem as there is a seperate service user pathway and that process has created challenges as well, because it has led to some of her works going on hold.
Still there has been good engagement where it has made a great difference for families. Shelagh mentions she goes on to contact carers and get feedback from them, which is incredibly positive. Shelagh stats that she has a very proactive approach to being in touch with families and carers and she essentially makes my initial contact with them introduce herself explaining what her role is.
Shelagh does ask carers, what would be helpful for them. But she also makes them aware that she will be touching base with them regularly. So her approach tends to be, and she will call and if you don’t want to speak to me, that’s absolutely fine. I will check in on a monthly basis and I wouldn’t take offense, if you tell me you don’t want to hear back from me going forwards. Oddly enough no carer has actually told her that they do not want to hear from her.
Still Shelagh does not speak to every carer that’s on the books and she does make contact with as many of them as she can, but is not permitted to contact some because there are some for clinical reasons that I’ve been asked not to be in touch with, which she felt was a shame, but she can’t argue with that because she does agree with that everybody should be entitled to access peer support, if they wish and she do think it should be your decision, I do think it should be a clinical decision.
So she has ongoing contact, which ranges from anything from every fortnight to every two months. What she also do is feed concerns that the family have back into the a clinician. So for example, we had a young woman who was being discharged. Her family had attended the discharge CTA section 117 meeting, but actually hadn’t been given any contact details for the community care coordinator or the accommodation manager. So I was able to feed that information in the team to get contact details from the team and was able to get information to that family.
As far as the NHS knows they were aware that she has ongoing contact with families, but what she finds really interesting is a professional at the NHS states to her that our contract has to be meaningful. What does this mean?
Well meaningful to who and when you drill down, meaningful contact seems to be viewed as contact that is going to provide information that’s relevant to the service user. So if Shelagh’s contact with the family is not going to provide the clinician with information that is useful and valuable to the service users care then there is little point in meeting the family, but Shelegh is against this culture, because in her role she is there to support the families and carers and I, if they happen to share something about services or have a team.
Shelagh does tell NHS professionals she works with right in the beginning, that she works for a charity in partnership with the NHS and has an honorary contract with the NHS. However she is not sure if it’s because she works in the charity or because the NHS hears the word peer that NHS professionals might stand back.
Shelegh feels the feedback she gets is the value of talking with somebody who has lived experience is “that you just get it” and the carer does not have to explain what things are like to me. Shelagh has lived through it. She feels because carers might be limited in communication if they are talking to an NHS professional, nurse or psychiatrist. There’s often a sense of well, what do you know? What do you know, you haven’t experienced it from my carer’s side? So how can you stand there and say this to me. Whereas carers sense if she says something to do them or listening to them, and they will often say to her but you do understand this, don’t you?
It’s like a shortcut has created in connecting with carers and families where you don’t have to explain to people, what it’s like to deal with your child who self harms and you don’t have to hide from people, or you don’t have to explain to people how heart wrenching it is to hear when your child says to you ” I don’t want to live anymore why dont you just let you die?”
You can find out more about Birmingham & Soulihil NHS Trust below.
Family Carer Peer Support Worker view on the future of carer peer support
Shelagh felt that there is a massive need for carer peer support workers. She is aware that carer peer support research is very limited. However, she thinks we have to look at is that the research into peer support itself shows its value. So why do we have to differentiate whether or not peer support is carer or service user we’re looking at here towards the value is of lived experience. Doesn’t matter what your lived experiences?
Personally, she don’t believe it does. And But clearly, there are people who work by the research. That being NICE (National Institute in Care & Excellence) works by the research, Shelagh mentioned that she is very upset wit NICE because of this and she think that’s really sad peer research is not extending to families and carers.
Shelegh feels when carer peer support is established and its on the ground then we can see the difference that it makes, she feels that does not matter, what the background of the lived experiences is and wonders is she the only person in the NHS trust, which has 4 and half thousand staff?
There is a definite barrier of some sort, by changing the way families and carers engaged. Shelagh thinks we need to be doing it. She thinks we need a top down and bottom up approach, which has to come together. Because if you don’t have the support from the senior management’s, you’re not going to have this sense of drive.
Shelagh hopes that over time, she hopes that more and more people will change and understand that families and carers are not just there to provide background information on the service user. Carers are the equal partners in the NHS and NHS professionals also have a responsibility to families and carers. Because if they don’t support the families and carers with somebody is in the inpatient setting and they just discharge them into their community that hasn’t been upskilled or that hasn’t been supported, then it’s good to keep that revolving door going on for decades.
South London & Maudsley Peer worker presents
Rachel who is SLaM’s lead for peer working thanked Don and Shelia for their experience and is eager to see what results in regards to NHS England’s pilot peer project. Rachel is interested in what worked and what didn’t work. She was also thinking very much about what was the feeling or thinking about peer support is it needs to be co produced. Rachel felt that we can’t just take the model from Birmingham or NHS England and then drop it down in South London and hope that it works.
What SLaM needs to look at is that we need to learn from what the carers want to help them relate and be involved and also engaging with the BAME community. We also want to make sure that we have something that we know works from the outset and avoid that one size fits policy, we need to be creative, and we hope to be working alongside our carers to make sure that we get it right.
Rachel feels the big questions and the elephant in the room is about money/resources and how state to the CCG or other people to make sure that kind of professionalized peer support is seen as important and something that they’re willing to fund that and I feel that’s where the carers forums like this really come into its own and making a guideline proposal around what you’d want from care with peer support.
Rachel mentioned it would be really useful for members to write something formal to the Commissioners about your needs and what you think professionalised peer support would look like. Rachel added what carers would think the benefits are to the CCG especially relating to the triangle of care.
So it’s not just around providing peer support and support for carers, but also making sure that that’s all linked in so we get a really good support for when someone’s discharged or someone’s community services. Its not only important support for carers, but it’s also seen as linking up care for the people who use SLaM’s services.
This concludes the September update for the Lewisham Mental Health carer forum.
This is my first blog post of many about my new book “A caring mind”. If you have visited this site in the past, then you are probably fully aware that I promote the experience of caring for someone with a mental illness. This book of course is no different and promotes my cause even further.
There are several differences between this site and my book and that is I cover my carers journey when caring for my mother and supporting my brothers. I also cover more in depth the importance of carers getting involved and also networking with each other.
Some information has been taken from my website and added to the book, but I have also included new topics that can only be read from my new book “A caring Mind”.
For anyone caring for someone with mental illness this book can give many things including identifying with other carers, giving hope for the future, examining current carer themes, empowerment for mental health carers and plenty more
Here are the chapters of the book, but if you wish you can buy my book from Amazon
Welcome to the august update of the Joint Lambeth & Southwark MH carers forum. This forum is run online due to covid-19 restrictions. The forum is aimed at those who are caring for someone with a mental illness. It is important carers understand what the mental health, health and local authority services has set aside for them and their loved ones.
For the month of August we were delighted to have John Lavelle the service director for Lambeth mental health services. We were also joined by Lee Roach who is the Head Occupational Therapist for Lambeth. In attendance were the carer members from both Southwark & Lambeth, Healthwatch Southwark and the chair of trustee’s from Southwark Carers.
The maim talking point for the August meeting was the Lambeth Hospital consultation. John spoke about how they want to improve the quality of the inpatient wards so that they can meet the most basic needs of the clients/patients. John stated that SLaM are committed to supporting people who are in distress because of their mental illness, they have an opportunity to build a new purpose, new mental health unit and SLaM are planning around how can they can make the service sustainable essentially for the future. I could certainly say most if not all members agreed with what John said.
It is well known that there has been number of periods of consultation for 12 weeks between March and May 2020. In the presentation to the forum from John, there were 2 options. Option 1 being that nothing is done about the state of Lambeth hospital or Option 2 where SLaM looks to relocate 4 acute wards and the Psychiatric Intensive Care Unit (PICU) to a new purpose-built facility on the Maudsley site, Denmark Hill.
There was another option to develop a new facility on the existing Lambeth Hospital site, but it failed to meet 2 key affordability tests.
These were that the option required additional capital of between £30 million and £35 million due to additonal infrastructure and loss of capital receipts, coupled with a need to decant at least one ward to the Bethlem and another to the Maudsley, causing significan disruption.
So eventually planning permission was granted in January 2020 by Southwark Council to replace the existing vacant Douglas Bennett House facility on the Maudsley Hospital site. It was also mentioned in John’s presentation that Service Users, Clinicians and Carers from a number of boroughs attended workshops to help shape the design so that a service user voice was present from the beginning of the design process.
The facility includes 72 acute beds for Lambeth patients across four 18 bedded wards. The wards will be single gender, compliant with modern standards and ventilated with direct unsupervised access to outside space. The facility will also include a Psychiatric intensive care unit and a rehabilitation ward designed to support the needs of these services.
Lastly two national specialist wards, neuropsychiatry and eating disorders will be transferred from the Bethlem Royal Hospital.
The carer forum were then showed their first visual of what one of the rooms would look like.
John Lavelle mentioned the mock ups are designed to give a with an idea what we think the rooms would look like. It is based on the drawings of that the architects came up with so the forum saw then would be things like flooring, textures and colors and even then those things might change.
John showed us what the dining space consisted of. He explained in the dining space there are two gentlemen sitting through the window and to the left is that kind of living space as you will see in the top left hand corner, one of our wards, current dining room on the London hospital site.
The carers forum were shown some figures in where
There were 235 responses regarding the consultation
48 people participated in focus groups and public event
148 responses in the online survey
24 people then also commented on facebook
171,189 were reached through the facebook adverts
12 email responses regarding the consultation
One thing noted was even though SLaM had the intention to have some face to face meetings, they ended up having to move everything to virtual because of the COVID-19 issues. There also was a focus on making sure new services would target hard to reach communities especially those from BAME background who often would feel they were being let down or having to miss out on services.
Of the response to the proposals with about 84 % of responses were being being in favor of the change. Plus of that 64% were positive in the move of the wards to Maudsley.
SLam also did a specific work with a black male group around the consultation, and I found that there needs to be some further work to do around culturally appropriate inpatient clinical offer.
A good example was that one member of that particular group mentioned that the ward looks great, but actually, it’s what happens within that Ward is most important. So John mentioned in regards to BAME communities that maybe we arent getting it right for the moment. There is still a lot of work to do.
There will be a piece of work that is going to start in September, which is going to be supported by black thrive, which then will have SLaM think about what their offer is to black men as an example, when they are using patient services. This is work in progress, but SLaM are committed to that as part of the feedback from the consultation process.
John mentioned that they will be analyzing that the data that they got back done by the trust or by the CCG. And it’s just a bit of worth reminder that the consultation was actually a CCG consultation, because they are the people that ask slam on their behalf to provide the services to Lambeth. So the CCG led on the consultation and now SLaM’s healthcare consulting team is going to do the consultation and they have produced a report on the Lambeth’s Together website.
At the end of the presentation I stated it was an excellent presentation and it always helps when you’re describing something that seems really complex. This is one of the reasons for this forum is to get carers in the community and those who’s going to be affected by those changes to get at least an idea and get a chance to ask queries or comments or even compliments if you think this is something that’s really needed
Questions from the forum members
First to ask queries where representatives from Healthwatch Southwark.
Healthwatch felt it was really interesting to see and wondered if SLaM had like a Lamberth versus Southwark resident breakdown, because they were a bit concerned that maybe less people from Southwark had been heard from because the presentation was kind of titled as like improving services for Lambeth.
Another interesting query was on how wide the consultation going to be? as in numbers wide. A carer queried on is it just the local community because the impression they got from the report is its the local community. Plus it’s a Lambeth hospital and it should go to the whole Lambeth and and what does it now offer to the whole of Lambeth rather than the local area. The carer felt that it seems to present sort of housing project and, and and who’s going to administer that, for instance, who’s going to have The freehold at that particular site?
One other carer stated they came across the survey document in May, but they wasn’t aware then that the there was no provision being made for the Leo Ward and the early onset for psychosis Ward that is currently at Lambeth hospital. They felt according to the one of the therapists from the Leo community mental health team, which has been caring for the person they are looking after. That ward was the only early onset ward in the whole of the country.
The carer felt the ward was fit for purpose when their ‘loved one’ was there and the ward had an en suite bathroom. It was basic, but it was fine. It had an outside exercise area, and it was all on ground level. There was a separate male and female words with communal are. There were separate rooms for visitors to explore and visitors to meet a family members the carer felt that her ‘cared for’ had a good experience in that ward.
We also had another carer talk about their daughters experiences in those wards. The carers daugher did not go into Leo Ward and still the Carer did agree with what was said Leo was a good word. As the carer felt it gave both communal areas and it gave privacy for people as well and they had access to outside to meet each other in for games. The carer concluded that access to outside is important, and they don’t think that can be really possible in the tower block. On the other hand the carer agreed that the other wards are not fit for purpose at all. They’re dreadful!!
I mentioned it was good to hear that there is a push towards engaging the black community, particularly in the sense that certain things are just not quite getting there. I asked John that although he mentioned Black Thrive, I have noticed they are quite active in Lambeth. I continued to state that I’m not sure who’s the lead or use the contact for black thrive in Southwark, so I wondered who is contact overall regarding consultation under black thrive, be good to get their perspective in this forum.
Some contacts were mentioned, but also there might be at some point an opportunity for somebody to come and talk to us about the race equality framework standards that piece of work which essentially, is about assessing SLaM against some standards that have been set nationally.
Southwark Healthwatch mentioned in response to another carer’s concern about a blog they did. They had a previous presentation about the kind of safety of the ward and the architecture where someone asked a question, kind of related to what the carer was concerned about, which is shown below.
John finished up saying that they do have a communications and engagement group that was originally set up to think about the consultation processes and what material they might want to use and who they needs to engage with as part of the consultation processes.
SLaM are moving on the journey of the new build and providing samples and giving sign off really soon. So they will continue to think about how they can keep engaging with our communities in understanding what’s happening with the new build and what they are doing around whether it’s working with black men or whatever the different possibilities. SLam are going to keep engagement for the next few years.
Lambeth Lead for Occupational therapy presents
Lee Roach has been busy and presented a set of initatives regarding carers. Lee admitted that they have a particular challenge in the patient information system. Especially on recording information about carers.
So what they have decided to do in Lambeth is focus one week initially on carers as a is focused week. Lamberth are undertaking a number of different events during that week.
Lee thanked one of the carer members who’s agreed to come and talk to a couple of teams about her experiences as a carer.
When Lee was thinking about what what to do for those carer events, he really felt personally that the biggest impact on himself as a clinician is hearing the kind of narratives of people that his worked with and that usually has the biggest impact in terms of people reflecting on what they’re doing and so changing their practice. So in terms of hearing the experience of a carer, Lee think that’s quite an effective way of actually impacting change.
What Lee want to see as a result of the week’s events is a greater awareness of the resources that are available to carers that staff can refer people onto. Lee also wants to run a greater awareness of some of the resources that our staff can show carers on the wards. There also has been sign off of that they want more carers involved in the involvement register.
Breakdown of events
Lee spoke about the plan of the carer focused events. Where a carer agreed to talk to the to one of their teams on Monday so that’s the low intensity treatment team about her experience.
They are currently working across two sites. While they are working across a number of sites the majority the mental health teams are working on two sites. There will be another carer who will be talking to the team there about her experience on Tuesday afternoon.
The inpatient Lamberth inpatient care his group will meet virtually that started two weeks ago. Where they had 12 people attend that group. One of one of whom was was attending from another country. On Wednesday afternoon Lee is hosting a roundtable talk with possible Lambeth CCG, carers and Lambeth healthwatch. Then on thursday is the Leo ward community carers group. Then on Friday they are launching the ward lockers project from one of the involved carers who has been active inputting ideas.
This concludes the update for the August Joint Southwark & Lambeth MH carers forum. The September forum will have Kings College hospital feeding back updates on their Mental Health strategy.
Welcome to the August update of the Lewisham Mental Health carer forum. This forum usually runs from the Carers Lewisham centre, but is now run online in order to avoid carers risking COVID-19 and taking it home to those they are caring for.
As a reminder the forum is an engagement, educational and empowerment group for those caring for someone with a mental illness. The mental health, health and local authority services are complex, ever changing and sometimes risks non-involvement or coproduction of carers and patients. The forum is a chance for carers to know what is happening in services and who is responsible for them.
South London & maudsley have been very supportive of the carer forums for over 5 years and counting. Still not only our local mental health trust engages with the forums. It now seems the Care Quality Commission is interested in grassroots forums.
The forum runs every last Tuesday of the month from 1 pm. For August we were joined by carers from other trusts including those in Greenwich and others from Southwest London. The carers were interested in how this forum runs and what they could take away from what was explained there.
Guest speakers were the CQC and also Lewisham’s Clinical Team Leader for mental health community services.
We started off by hearing from Susan George who is an inspector for the Care Quality Commission. Her main work is in inspecting GP practices. The CQC look at how they are complying with the regulations of the health and social care act, but also to look at the quality of care.
The inspectors from CQC recently visited my Lewisham BAME Mental Health carer forum and although they wanted more information on inspecting mental health services, it would be strange to say that GP practices were not involved. There is an extra twist, because the forums are carer forums the CQC are interested in how GPs are recording and identifying carers.
So for August forum, the CQC were back to observe and engage with the forums closer than before. They are interested in becoming members.
Susan has been active for about two years and the look of the portfolio of GP practice in southeast London in Lewisham. Members are interested in the organisational structure of the CQC and what departments report to who and so on.
Susan continued by mentioning they want to improve their reporting on the quality of care provided by GPs for carers in the community. She feels there is definitely some work we can do together to try to improve the narrative in terms of how we report our findings in the area. She gave thanks to Natalie Parsons, who is a manager in the hospital’s Directorate at CQC.
The Lewisham Carers forum was also joined by SLaM’s involvement lead for Lewisham and Croydon. She also run’s the Lewisham advisory group that has raised several points for discussion with Lewisham health commissioners.
Susan mentioned that as an inspector she is particularly interested in the support that GP practices give their carers. It is vital for doctors and GP practices to identify patients who are carers, and that might include young carers as well.
She thinks it’s true to say that carers have certainly been affected by the change In the way that GPs are providing consultations, such as online consultations, and that, as an inspector, she is sort of looking closely at how access to these services change for people who may be vulnerable people with illness. This goes double for carers as well. It is a real challenge, because not everybody set up with online, facilities, internet and so on. Susan is also particularly interested as well around the space of health inequalities that have started to be talked about since COVID took hold, and particularly around the health inequalities in the BAME community. So it’s good for her to get to join your discussions in the forum.
Susan mentioned that one of the things we are trying to do is work across directorates. She feels forums like this one can help the CQC to share ideas about how they can improve and reporting on the quality of care for carers, especially when they go into GP practices, the CQC will expect to see their carer’s register. Plus the CQC will also want to see if the GPs are improving the number of carers that they’ve identified.
She thinks we do need to have more conversations within CQC. Natalie may have touched on this, and they are looking at how they can improve their our approach and methodology. So, at the moment, it’s still in the early stages. Still one of the areas has been identified on how the CQC can engage with providers to help to drive that improvement.
Questions from carer forum members
One carer was interested that the Care Act 2014 was released close to 6 years ago and feels change is not coming far enough. The carer feels that things have been going backwards due to cuts in services and local services. The carer asked Susan why are things taking so long?
Susan agreed in stating that it shouldnt have taken as long as it should. She does feel that there is real focus on it now. Its about the relationships the CQC can now build and listening to people like us and having frank conversations.
I did mention that to be fair, I do not think it’s completely the CQC’s fault, because there’s many other organizations including the local authorities. I mentioned that this forum struggles in getting a local voice because we can never find who or what is responsible for certain things.
Another carer was interested in how do the CQC capture carers feedback about the service they receive?
Susan responded that we do try to speak to people when we go on inspection and they pick up on information about how to feedback. There is also a chance to feedback on their website.
Susan mentioned that they also want GPs to publicize how carers can give feedback or leave feedback. So that we can also look at that on inspection. So the CQC will look to see whether GPs have got a system where they invite and asked feedback. If they have got posters in the waiting room, inviting carers to give feedback about the care and service they receive. The CQC can even also monitor phone calls and emails that we receive. So we’ll be looking at those quite closely.
One carer member fedback on her experiences with her GP and how she experienced qualify of care for her and who she was looking after. The carer acknowledged that we all know the mental health is the Cinderella of the NHS. So you can see how many in all these directions that things are falling on the the unpaid carer. Susan agreed that the carer made a really good point about that sort of twofold awareness of the GP needs to have. The GP practice needs to have about not only identify with carers, but how is the carer is getting on with the person they care for
Another carer agreed that the online consultation for obvious reasons, was not going to be sufficient and a lot of people don’t know how to go online. Even if their GP sent them some information, it might not be always easy to access or to understand what the GP or drugstore have liaised with.
Susan agreed with the carers comment about how the lack of mental health focus on carers literature and leaflets. One of the things the CQC like to check when we go into the practice to inspect is that there’s lots of information for carers and that’s visible and perhaps using different languages. Susan from the CQC is also going to find out if they have an analytical team at CQC that helps to provide Some data for the next forum.
I mentioned that the way I see this forum is that carers can come together as almost as an empowerment. Besides since GPs are businesses anyway. So i would be interested to have like a list of GPs to have some rating in regards to how they are responding to carers. Plus how they engaged with them and what sort of initiatives are set aside for carers.
One more carer spoke about the difficultly she had when the surgery stated that she needed to bring her ‘cared for’ into surgery. Even though she escalated it and got through the practice manager, the surgery still insisted they couldn’t do anything due to confidentiality and this led to prescription issues.
Susan stated that they’re not allowed to ignore complaints and that they need to acknowledge your complaint within probably a couple of days, and they need to investigate it. Because when a patient complains, or when somebody complains to practice, it may well be that there are elements of how they provide a service that are actually falling short, and they’re not going to improve unless they investigate.
Susan raised an example of that learning can be shared with members of staff involved, and she felt you should definitely continue to raise that complaint to the GP practice and they should acknowledge your complaint and also give you a sort of timescale about how they’re going to investigate. The CQC always encourage people to complain directly.
General Manager for mental health in communities discussion
Stephenie Edwards introduced herself to the forum as the General Manager for communities. They are in the midst of and have been for some time of actually starting to transform some of their community services. Over the years Stephenie has been attending some of the carer forums, but she is retiring now. So it will be the last time that we actually see her at the forum.
Stephenie continued that they were starting on creating pilots last year and they have been going out to service users and carers just to actually gain some views and thoughts. One of the things that was brought up was around waiting times, for both clients and carers. What they have done is that they were changing around their front end about services, particularly in that where they were splitting their services into neighborhoods. They piloted the split initially from last March 2019 for neighborhood 1, and what used to be their assessment and liaison service where people can be referred by GPS, is actually now based within the Waldren GP centre in Depford, and so their nurses are Mental Health advisors, application specialist OT, social workers based on site.
Patients also go to other GP practices and they have what’s called a very quick triage. So GPs can request a service as soon as service users couldn’t be contacted if things were urgent within 24 to 48 hours.
Stephenie stated that they started in March two weeks into their pilot, but unfortunately they were hit with what the what the whole nation is dealing with the COVID-19 pandemic. This disrupted their systems and all of their plans. Still to some extent we were adaptive because they created groups to run from different sites and services, but at the moment, you can’t work face to face with people in group settings over time. To in some cases, online and the OTs are trying to work out other ways of working with service users that are face to face.
It was suggested by SLaM that the team launch another pilot for neighborhood three in Lewisham. Stephenie mentioned she was excited to say that she is going to meeting after this where they will be saying whether it’s safe or not to launch, neighborhood three. She anticipats it will be safe and start launching the day after the carers forum. The team have a new staff interface, that is a challenge to the launch. So what they have found Is that Deptford which is north of the borough is very different to South of the borough of Lewisham. One of the reasons is there are different communities there that they had to get to know in terms of meeting patients, but they are going around GP surgeries and asking if they can have some space to see people on GP sites.
Stephenie made a point that lots of people in the past, potentially felt stigmatized, by coming into community mental Health teams, we would have as much as possible we can see people just coming in for services within GP practices where you know, where where we can get, I think, any available space in GP surgery premium, but that’s what we’re hoping. And, and we have expanded or we’re in the process of psychological interventions for service users.
She feels this is a big thing because service users have told them for a long time that there needs to be more psychological intervention. And she thinks as it stands at the moment, we’ve increased our psychological retention by 15 new posts, however not all the people are in those posts at the moment, but they are recruiting to run the adverts are out. So there’ll be a lot more psychological intervention available.
That might be quite short term intervention or some longer term intervention, but it will be a standard model of care. So people will be assessed when they come in. And then from that assessment, it will be decided and agreed to what care plan and what an intervention would be best at that time for that person.
Traditionally, Stephenie’s team worked primarily with care coordinators who are managed care of a number of people, maybe 25 to 30 people. What she is having trouble with is actually recruiting nurses. And that’s been ongoing for the past four or five years. The thing is they have a number of vacant posts that they haven’t been able to recruit to repay agency costs equal to a higher premium. So when they have started to look nationwide, about how they can do things differently.
Questions from the carer members
One carer member was interested on who Stephenie’s successor would be. The CQC were also interested. Stephenie stated it was someone called Wendy Dewhirst she currently works in Southwark at their acute referral center. Wendy has worked for SLaM for a long time.
Another carer gave a suggestion that because one of the major things as people with mental health is, if they know this, their benefits is going to be stopped. It doesn’t take a genius to work out and it would send them spiraling. Some of them could end up being sectioned. That’s how bad things have got. Could you please have a specialist for PiP forms within the mental health team.
Stephenie explained that Bromley, Lewisham & Greenwich MIND are employed to help on this and they work with them. She mentioned they do a lot of work around benefits and are very skilled in it. They have also got vocational support staff and a lot of service users that they work with. Vocation workers themselves are absolutely experts in benefits, but the demand is so high that they can’t do that all themselves.
The carer replied that in the past a service couldn’t get help on benefit forms and that person just gave up. She knows it’s impacting mental health survivors and she knows this is going to have a knock on effect on service users which cause their mental health to deteriorate as well. Stephenie did admit that it’s going to get bigger with service users being furloughed maybe in October not having a job to go about, but she feels that’s where their vocation specialists will do all they can to help people retain their job.
Other carers are continuing the raise the matter of carer support workers, especially some years ago 2 SLaM carer support workers were lost and now no one has any understanding of carer support numbers. Stepehenie mentioned that a new carer support worker role will be introduced and mentioned this was a drive by Lisa Brian who heads adult social care in the borough. Denise O’brien is at the point of recruiting the carer support worker and they will be working with on strategy for carers in Lewisham. These adverts are going out either imminently or going out over the next four weeks. So it’ll probably take at least two to three months before carer support worker is actually in post. I requested that the advert also be sent to the group so carers can see what role the carer support worker will be employed for.
Another carer was interested in how community mental health services in the Borough of Lewisham were taking into account diversity issues of carers. Stephenie agreed that this should be a remit for all services across the country. She continued by stating Donna Heywood Sussex who is Lewisham’s Service Director has taken BAME issues very seriously and they are in the process of producing a BAME strategy. Plus they also have Leonie Down who is Lewisham Head of Occupational Therapy and Safeguarding Adults Lead working to engage the community and also get staff involved in the BAME strategy as well. She did state its worth asking Denise O’Brien to attend the forum to speak to carers about any carers strategy, but over the 5 years it has been difficult to get any insight into carer initatives in Lewisham and carers are wondering if there is co-production at a local authority level.
It was good news that the involvement lead will try again to get Denise to attend the forum and speak to carers about any initatives and we are really hoping things will be different this time. Lastly there was an update from Jane Lyons who is the involvement lead on getting patient systems to talk to each other. These being of patient records by with SLaM EPJs and GP patient systems.
This concludes the August update of the Lewisham MH carers forum. Next month 2 mental health trusts are to send their carer support leads to educate carers about the importance of carer peer support their carer peer support strategies.