Violence in informal caregiving relationships – Research

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

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

You can contact the researcher on the following details.

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

Joint Southwark & Lambeth MH Carers forum October 2020

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

SOUTHWARK HEALTHWATCH UPDATE

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

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

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

LAMBETH CARERS UPDATE

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

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

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

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

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

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

SOUTHWARK CCG – South East London Clinical Commissioning Group UPDATE

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

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

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

SOUTHWARK CARERS UPDATE

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

Southwark carers

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

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

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

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

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

UPDATE FROM SOUTHWARK INPATIENT CARERS LEAD

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

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

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

UPDATE FROM LAMBETH HEALTHWATCH

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

Mental health of young people

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

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

Campaigns regarding world mental health day

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

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

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

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

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

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

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

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

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

Lewisham BAME MH Carer Forum October 2020

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

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

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

UPDATE FROM RUBY PEACOCK.

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

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

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

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

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

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

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

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

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

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

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

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

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

QUESTIONS FROM MEMBERS

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

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

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

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

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

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

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

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

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

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

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

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

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

ARTIST LEO JAMELI PRESENTS TO THE FORUM

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

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

You can see the art projection in the link below.

The invisible carer site

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

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

CARER MEMBER RESPONSES

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

HEALTHWATCH LEWISHAM ENGAGEMENT

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

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

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

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

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

We Coproduce October forum 2020 – A Caring Mind book Section

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

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

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

Matthew Mckenzie speaks about his new book – A Caring Mind

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

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

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

Lewisham Mental Health Carers forum September 2020

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.

https://www.sussexpartnership.nhs.uk/

QUESTIONS FROM THE FORUM

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.

https://www.bsmhft.nhs.uk/

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.

World Mental Health Day 2020

Welcome to another Blog post from Author of A Caring Mind, carer activist and former carer Matthew Mckenzie. As of today being the 10 of October 2020. It is World Mental Health day and The theme set by the World Federation for Mental Health is ‘mental health for all’.

There are many organisations and charities promoting world mental health day. If you want to see the video of this blog, then see below

World Mental Health day is about continuing to raise that much needed awareness of mental health each year. This year’s theme set by the World Federation for Mental Health is ‘mental health for all’. When we talk about Mental Health, people tend to feel mental illness is about Mental health problems and how it affects around one in four people in any given year. Those illnesses such as depression and anxiety, to rarer conditions such as schizophrenia and bipolar disorder.

Mental health problems affect around one in four people in each year and since this has been a tough year due to lockdowns and loss that have had a huge impact on our mental health.

However we can all feel depressed, angry, stressed or frightened. This is why Mental health is everyone’s business. We cannot continue to state severe mental illness is someone elses problem to fix. Taken to the extreme, even anger can become a mental health challenge if it gets out of control.

It does not help that around 450 million people live with mental disorders that are among the leading causes of ill-health and disability worldwide (WHO’s World Health Report, 2001). The World Economic Forum (2018) noted that mental health disorders are on the rise in every country in the world and could cost the global economy up to $16 trillion between 2010 and 2030.

From job losses and uncertainty. We’ve all found ourselves under pressure and carers are not exempt from such pressures due to having to care and support someone suffering mental illness due to extra strain. It is important carers get a chance to support their own mental health and wellbeing, please its so important carers take a break and take time out even if only for a little while.

There still is mental health stigma leaves people feeling isolated and ashamed and not being able to access support, so this is one of the reasons for campaigning on World Mental Health day.

The good news is that you can do something for World Mental Health day and raise awareness, be it by talking about it, campaigning even if using social media or attending online events, it does not hurt to raise that awareness.

New book – A Caring Mind by Matthew Mckenzie

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

  1. Telling your carer story
  2. My story
  3. Caring through Coronavirus
  4. The tragedy of Young carers
  5. Carer traits and characteristics
  6. What I found vital for carer support
  7. Networking with Fellow Carers
  8. Including unpaid carers in NHS Co-Production
  9. The stigma of an unpaid Mental Health Carer
  10. What I learned as a carer

Lewisham BAME MH Carer Forum September 2020

Welcome to the brief update of my Lewisham BAME Mental Health carer forum which is aimed at minorities caring for someone with a mental illness in the borough of Lewisham. The September forum looked at engagement from South London & Maudsley’s IAPT service (Ellen Heralall) and also engagement from the SLaM QI Peer Project Worker (Richard Mortan).

We were joined by the regular carer members and also newer members including some from my other carer group in Greenwich. There were also some members from community groups including African Advocacy Foundation, Bromley, Greenwich & Lewisham Mind’s community wellbeing group and others.

We were also joined by the comms rep from Birmingham Community Healthcare NHS Trust who was interested on BAME developments in the area. We were also joined by Leonie Down from SLaM who is developing partnerships across Lewisham as part of the transformation of mental health services. Part of her role is to bring together a community strategy for service users, staff and carers within slam.

Ellen explained more about the IAPTs service which means Increasing Access to Psychological Therapy. The IAPTs service has just been running over a decade. They are based in primary care. So they operate very closely with the GPs and operations within GP surgeries. The IAPTs is also now part of the national framework, which is provided by NICE (National Institute of Care and Excellence) which recommend treatments. The aim is to provide easy access for the community to receive psychological therapies for depression and anxiety primarily, but not complex mental health conditions.

The referrals would come up from the GP and people can refer online to go through the triage process. Then they’re offered either step two treatment, which is a Guided Self Help well-being option via online CBT and psycho-education.

Ellen explained that the therapy will usually last generally from six to eight weeks. She mentioned that as with a lot of NHS services, they are fully aware of the discrepancy in the quality of services for the BAME community, accessing IAPT services. Plus when they do access our services, we are also aware of the inequality of their experience and their outcome in poor experiences.

So SLaM have been working on their objectives, but they are resourcing and working hard to look at improving the access of IAPTs to the BAME community,

SLaM are working with our community partners. Which is the big drive for SLaM at the moment to work with community groups, especially with ones attending such forums e.g. community groups, wellbeing groups and fitness garden projects that already exist in the borough. SLaM are partnering up with such groups and seeing how they can work together to bring psychological therapy and mental health awareness treatment to the community in a way that is relevant for them.

Ellen reported that SLaM are also reaching out to step outside of the box and make themselves more accessible to provide such psychological treatments, but also to build more relevant services where to a greater racial understanding of how racism, and discrimination and inequality affects mental health. This helps in raising the awareness of triggers in such experiences. Racism is a trigger and discrimination can also be a trigger to mental health. It is important such forums like the BAME carer forum exist so these things can be talked about in safe spaces.

Ellen mentioned that it’s good to be at the carers forum to talk and network about how how we can continue to become a more accessible and more relevant service.

IAPTs will work with those from culturally sensitive support groups. So there’s lots of different projects IAPTs is involved in. They have become a sort of a broader service that is probably in excess of 100 staff on IAPTs alone.

Ellen felt it was time to open up to questions from the members and attendees from the Lewisham BAME carers forum.

Question and answer session at the forum

The first question was on working with grassroots practictioners on issues with racism, discrimination and some data triggers that effect on mental health.

They wondered how IAPTs is mainly dealing with practitioners and the community within that kind of setting and how does it actually work? Especially with the aim to raise awareness and to deal with the issues of the experience of racism in the community.

Ellen mentioned that there was someone who had been running these groups already. She runs the groups in culturally sensitive emotional support groups aimed at the black and African African Caribbean community, which were 12 weeks. Ellen quoted that the groups were safe spaces to talk about mental health and a convient way to develop emotional wellbeing.

Other questions were on staff and how many were from the BAME community. Ellen did not have the figures to hand, but is bound to bring them at a later date, although she did mentioned about 50% to be vague. Ellen actually leads on the counseling team and because they come through a different sort of training and different routes they tend to get a very diverse range of counselors.

The psychological well being of practitioner to practitioners are now become more increasingly diversity, Ellen might have to get back to exactly the figures, but SLaM are certainly visibly increasing numbers of young BAME psychologists coming into that work stream, where the mental health service have the biggest problem is in in high intensity CBT.

Although BAME therapists certainly are increasing, Ellen felt we’re not there yet. The service is still actively recruiting BAME therapists.

The impact of COVID and technology

Another question arised regarding COVID-19. The carer member queried about lockdowns going on for another six months, he felt carers will come to the organization in six months time, with the community suffering with depression, anxiety and stress. The carer was wondering how they’re going to cope with the extra load BAME carers who have suffered.

Ellen responded on why she is glad to be at the forum. She would like to speak with the group to be able to plan resources. She admitted it would be a difficult task. Within the Lewisham IAPTs she mentioned they have got two priority streams. One of the streams they call priority pathways where One of them is NHS and social care and the priority stream can be tailored to support BAME carers who have been hit hard by the COVID-19 impact.

The carer member responded back stating supporting BAME carers through the crisis is only part of the problem. He felt how can black people know what IAPTs is doing? Especially for COVID-19. So they feel they can come to you when they have a mental health issue and not waiting till they’re in a crisis.

Even the internet can be a problem in itself. If you haven’t got the internet, how do you get on onto a website? So I’m just looking about what IAPTs is doing?

Ellen did completely agree that they are also concerned about people who don’t have access to the Internet and digital services. The services are hoping to open up one of our sites, so that they can do face to face work for people who can’t access digital treatment. They even do telephone treatment which works quite. There is still a lot of work to do.

Other carer members were interest in the size of the Lewisham IAPTs team and how the core element works in diversity. The carer member was interested in how IAPTs is reaching the community. Other members gave some ideas regarding churches, supermarkets and leaflets. Some members mentioned there is a problem with GP referrals and there was criticism on social perscribing in where people just get endlessly referred and not supported.

One other question I felt was interesting was from another carer interested in if there is a body? Which has overarching responsibility for your services in terms of any mental health? This then led to another question from another carer regarding when IAPTs signposts people to the other services, social services and so on. Is there an effort made to check with how that signposting is working? How did they actually make a good connection? How long? How long does it take for that person to get an appointment.

Presentation from SLaM QI Peer Project Worker

Next up to speak to the BAME carer forum was Richard Merton whose role at South London & Maudsly NHS Foundation trust is to try and improve service user and carer voices into MH services. Richard started about how they had an event in July, where the aim was to talk about people’s experiences of meaningful contact during COVID and the sort of things that might help going forward.

From that event they took that away some themes and feedbacks. One of the themes or discussions that was touched upon in that event was of how the trust can support BAME carers. So Richard reminder us that there is another event on the 8th of October and it would be great if anybody wanted to come along to that. A lot of the things that was also discussed at the last event in July was around technology and access to technology, plus some of the things that the forum had been talking about.

Question and answer session regarding Quality Improvement

One carer member was interested in the speed of action from meetings as in how long when they have decided what the outcomes are of these meetings? The carer member continued stating how will Richard or the NHS Trust be able to really take to put decisions into practice? Because he does not want us to say, yeah, we’re going to do this and We’re going to do that. And then this time next year, we’re still working for the outcomes of these, because of the situation we are were under a moment.

The response from Richard was on how things are going to take some more of a structural change. However the event is kind of a listening event based on what communities asked initially. Richard suggested that he thinks it’s always important to come back to someone and annouce what could or could not be done based on what was requested.

Another carer member issued a request stating that if Richard be sure to send information about the October event through the involvement register. Plus to make sure to use ways and other means of sending the information out and spread it as widely as possible to the community.

Another member of the forum mentioned the situation with local government and the impact on BAME carers. She felt that people are not looking at financial aspect of that being at home and having to be connected digitally. Its like having to use the internet and there is no compensation because BAME carers are having to make sure they have to stay online, to be able to be in contact with all the things that are going on in the community, but the bills are going up.

The community support member continued to mention that she has lots of clients who are actually in financial problems. As in losing money in which they can’t have the internet, they can’t be able to be involved. So what aspects are they going to help people like that, she thinks this needs to be looked at the long term due to the high risk of people losing their jobs.

Richard mentioned that NHS England, have got a branch called NHS-X, which looks at technology. And so that’s slightly will take a bit longer, but they’re looking at questions like the community support member raised. Richard also raised the point that at the trust they had a response to COVID. They have a few what they call workstreams going on and one of them is remote consultations and how we can do that across the trust.

Another carer repeated the question saying this problem with technology and paying for broadband and so on, has been going on even before COVID-19. She had to support someone and still supporting that person after she had spiralled down into severe depression. It seems that one of the causes was the person she is supporting was in serious debt, partly because of phone bill.

One of the newer carer members pointed out that the financial issues have always been an issue. And it’s a mental issue. And it’s just the way it is, and it’s never gonna change any time soon. But the question really is how you change that. And when you use the word inclusion, or what we use when we talk about community, there was a way of taking that deficit and turning it into a positive. This is what is needed to be involved in a community. So if there’s a way of paying it back then it is a sort of benefit. Because then you’re giving help to that person who then learns as if it’s an education. I have no idea why this is not happening, but all businesses should have a social responsibility

Richard mentioned how there was support from Charity especially regarding the purchase of mobile phones to help mental health staff connect more with their patients. Richard admitted charity cannot be the complete answer. Richard also wanted to say that a few of people at the forum came to an event in June, which was a big broadcast, where SLaM plan on developing work streams linking the leaders of the council’s together, and and looking at some of these social issues.

Some of the members of the forum are also members of the Lewisham BME Network, one member of the group mentioned an initative from Microsoft that is currently investing in BAME communities. She felt that it is really significant if Microsoft is connecting with some of the groups, and maybe other providers are doing the same like Virgin, or one of those. She felt that perhaps we could ask them on what they do for charities. So there’s probably things we could do in the community that would impact the way we take on the digital platform.

Other carer member raised an important point on that there are many strands to what needs to be done within the community. But if we’re talking about the individuals, within the community, black and white who are experiencing poverty and no access to the internet and phones. He thinks there’s more of a structural in political resolution to this and not just community based solutions. So maybe talking to MPs and putting pressure on them in that sphere, to look at the whole wide community as a whole, not just particularized issues that we’re raising today.

This concludes the brief update of the September Lewisham BAME carer forum.

World Suicide Prevention Day 2020

Welcome to another blog post by Matthew Mckenzie former carer and expert by experience in caring for someone with a severe mental illness. I know it is a bit late, but on the 10th of September 2020 it was World Suicide Prevention day.

Suicide Prevention is so important that awareness of it should be raised at any time. I even made a video to help raise awareness of suicide prevention.

Usually I raise awareness of carers, specifically carers who care for someone with a mental illness, but every so often I do want to raise awareness of mental health. The causes of suicides are an important issue because it certainly does involve mental health.

World Suicide Prevention Day is an awareness day observed on 10 September every year. World Suicide Prevention Day aims to start the conversation about suicide and to show that recovery is possible.

There are many charities and organisations promoting world prevention suicide day. The theme for World Suicide Prevention day is of ‘connection’ and ‘Working Together to Prevent Suicide.’ The awareness campaign is organized by the International Association for Suicide Prevention (IASP)

With World Suicide Prevention day it is especially relevant because Covid-19 has affected us all in different ways and brought new or increased challenges. Many people have lost so much, be it homes, loved ones and that form of connection to society and to the world.

Having a strong sense of connection is an important part of suicide prevention. We all can form a connection with friends and family, as family is so important when caring for someone.

But still, Why is World Suicide Prevention day needed? Unfortunately 800,000 people take their own life each year. Despite the terrible statistics, one life taken is always a tragedy. There is still a lot of work for the government, health organisations and society to do. Families and carers looking after someone who may suffer from suicidal thoughts can be devastated when they loose someone to this.

Reaching out

It is often helpful for people to have an honest communication about mental ill-health support. Having such conversations have the power to increase awareness and helps to break the stigma of mental health . It is always important to remind people are not alone.

If suffering from suicide thoughts it is good to let family or trusted friends know what’s going on for you. They may be able to offer support and help keep you safe.

Joint Southwark & Lambeth MH Carers forum August 2020

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.

https://www.healthwatchsouthwark.org/blog/2020-04-30/whats-happening-lambeth-hospital-blog-southwark-mental-health-carers-forum

Conclusion

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.