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

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

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

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

Heather Begg commissoner for Merton’s carers strategy presents

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

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

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

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

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

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

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

THE 11 PRIORITIES

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

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

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

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

PRIORITIES

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

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

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

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

Questions from members

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

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

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

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

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

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

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

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

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

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

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

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

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

The Nearest Relative query

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

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

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

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

QUESTIONS FROM MEMBERS

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

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

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

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

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