Tag Archives: mental health

Black Thrive Employment Project: improving outcomes for Lambeth residents with long-term conditions

Black Thrive is a partnership between communities, statutory bodies, voluntary organisations and the private sector. We work together to reduce the inequalities and injustices experienced by Black people in Lambeth.

According to the GSTC “One to Many” report, more than 1 in 5 residents in Lambeth live with at least one long-term condition. Over 19,000 live with multiple long-term conditions (three or more). Even though Black communities make up 18% of Lambeth’s adult population, they account for 27% of people with multiple long-term conditions. Furthermore,

in Lambeth, Black residents are four times more likely to be unemployed than white residents. When they are employed, they are disproportionately engaged in insecure, low-paid and dangerous work, which harms mental and physical health. In addition, Black people can face racism and discrimination in the workplace, which negatively impacts mental well-being.

Therefore, we know that people of African and African Caribbean descent in Lambeth are more likely to be unemployed and more likely to have poor health. One of the key drivers of these inequalities is structural racism and the fact that our current healthcare and employment systems prevent Black people from thriving.

As a result, in collaboration with Guy’s and St. Thomas’ Charity (GSTC), Black Thrive’s Employment Project is developing community-led solutions for improving employment outcomes for Black people with long-term conditions. Our goal is to ensure that Black people in Lambeth with long-term conditions are as likely to be in and sustain, meaningful employment as equivalent white people.

To do this, Black Thrive is partnering with community members, statutory bodies and local organisations to achieve justice for the Black community through radical systems change. In September 2020, we launched our £300,000 grant fund to pilot projects that consider the lived experience of Black people with long-term conditions and have the potential to create systemic change. Projects should test and pilot new ideas that have the potential to shift the dial on employment outcomes and improve the evidence base around what works for Black people in Lambeth with long-term conditions.

The fund was managed and distributed by our Employment Working Group; a group of local Black residents with lived experience of managing one or multiple long-term conditions. We believe that prioritising community-power and lived experience is a radical way of funding new and exciting initiatives that may be overlooked by the traditional system. After receiving 84 applications, the Employment Working Group decided to fund 8 projects – the vast majority of which are led by Black and disabled people.

Funded projects include a radical self-care and wellness to work programme, the creation of a network of Black social entrepreneurs, supporting those recovering from mental illness and substance addiction back into employment through dog day-care traineeships and empowering Black people to develop employability skills through social action. To read more about all 8 projects please visit: https://employment.blackthrive.org.uk/our-grantees/

As the projects begin recruiting participants, it is important we ensure that the opportunities available reach the most marginalised people. This is a form of systems change in itself, as it will allow those people who fall outside of traditional referral pathways for services to still access support. 

Given that carers have an intimate and trusting relationship with their loved ones based on an acute understanding of their needs, interests and goals, they are a vital network which cannot be overlooked! We strongly encourage all Lambeth-based Black carers to review the projects on offer, share them widely within your networks and follow the sign-up process if you, or someone you know, is interested in taking part.

If you have any questions about the Black Thrive Employment Project, please email: employment@blackthrive.org.uk

Black Thrive Employment Project Grantees

Patient and Carer Race Equality Framework at SLaM

Welcome back and thanks for stopping by. Have you ever heard of PCREF? There was a blog about it in 2019 regarding mental health inequalities for black people. Mental Health outcomes for those from the Afro-Caribbean community has been very poor for a long time. So there has to be some form of change, but how can this go about? I think it starts with the community and a way for black people to come together and query how mental health services and support the community.

The blog about health inequalities from NHS England is below.

https://www.england.nhs.uk/blog/how-can-we-have-the-same-outcomes-when-were-not-having-the-same-experiences/

South London & Maudsley short for SLaM are one of the mental health trusts looking to work with the black community on ways to support wellbeing and close the inequalities gap.

I recently made a short video as an intro into black health inequalities, although its not going to be the only video I am working on.

They are looking for members of the Black community to attend a series of events SLaM call ‘Fit for Partnership’. These events well focus on four boroughs they run services.

  • Croydon’s Black Community:  Tuesday 19 January, 6pm – 8pm:  Register here
  • For more information email:  CroydonIAG@bmeforum.org  

There will also be a Black service users and carers event, where details are below:

Four borough Service User and Carer event:  Thursday 4 February, 1pm – 3pm:  Register here 

For more information email PCREFapproach@slam.nhs.uk 

Lewisham Mental Health Carers forum October 2020

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

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

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

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

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

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

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

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

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

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

QUESTIONS FROM THE CARER MEMBERS

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

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

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

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

CQC PRESENTS UPDATES

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

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

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

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

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

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

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

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

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

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

HEALTHWATCH LEWISHAM ENGAGES WITH CARER MEMBERS

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

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

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

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

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

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

CARERS FEEDBACK TO HEALTHWATCH LEWISHAM.

Many of the group members fedback experiences on the following.

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

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

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/

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.

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

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.

Lewisham Mental Health Carers forum August 2020

133Welcome to the August update of the Lewisham Mental Health carer forum. This forum usually runs from the Carers Lewisham centre, but is now run online in order to avoid carers risking COVID-19 and taking it home to those they are caring for.

As a reminder the forum is an engagement, educational and empowerment group for those caring for someone with a mental illness. The mental health, health and local authority services are complex, ever changing and sometimes risks non-involvement or coproduction of carers and patients. The forum is a chance for carers to know what is happening in services and who is responsible for them.

South London & maudsley have been very supportive of the carer forums for over 5 years and counting. Still not only our local mental health trust engages with the forums. It now seems the Care Quality Commission is interested in grassroots forums.

The forum runs every last Tuesday of the month from 1 pm. For August we were joined by carers from other trusts including those in Greenwich and others from Southwest London. The carers were interested in how this forum runs and what they could take away from what was explained there.

Guest speakers were the CQC and also Lewisham’s Clinical Team Leader for mental health community services.

We started off by hearing from Susan George who is an inspector for the Care Quality Commission. Her main work is in inspecting GP practices. The CQC look at how they are complying with the regulations of the health and social care act, but also to look at the quality of care.

The inspectors from CQC recently visited my Lewisham BAME Mental Health carer forum and although they wanted more information on inspecting mental health services, it would be strange to say that GP practices were not involved. There is an extra twist, because the forums are carer forums the CQC are interested in how GPs are recording and identifying carers.

Quality-Care-Commission

So for August forum, the CQC were back to observe and engage with the forums closer than before. They are interested in becoming members.

Susan has been active for about two years and the look of the portfolio of GP practice in southeast London in Lewisham. Members are interested in the organisational structure of the CQC and what departments report to who and so on.

Susan continued by mentioning they want to improve their reporting on the quality of care provided by GPs for carers in the community. She feels there is definitely some work we can do together to try to improve the narrative in terms of how we report our findings in the area. She gave thanks to Natalie Parsons, who is a manager in the hospital’s Directorate at CQC.

The Lewisham Carers forum was also joined by SLaM’s involvement lead for Lewisham and Croydon. She also run’s the Lewisham advisory group that has raised several points for discussion with Lewisham health commissioners.

Susan mentioned that as an inspector she is particularly interested in the support that GP practices give their carers. It is vital for doctors and GP practices to identify patients who are carers, and that might include young carers as well.

She thinks it’s true to say that carers have certainly been affected by the change In the way that GPs are providing consultations, such as online consultations, and that, as an inspector, she is sort of looking closely at how access to these services change for people who may be vulnerable people with illness. This goes double for carers as well. It is a real challenge, because not everybody set up with online, facilities, internet and so on. Susan is also particularly interested as well around the space of health inequalities that have started to be talked about since COVID took hold, and particularly around the health inequalities in the BAME community. So it’s good for her to get to join your discussions in the forum.

GP Lewisham

Susan mentioned that one of the things we are trying to do is work across directorates. She feels forums like this one can help the CQC to share ideas about how they can improve and reporting on the quality of care for carers, especially when they go into GP practices, the CQC will expect to see their carer’s register. Plus the CQC will also want to see if the GPs are improving the number of carers that they’ve identified.

She thinks we do need to have more conversations within CQC. Natalie may have touched on this, and they are looking at how they can improve their our approach and methodology. So, at the moment, it’s still in the early stages. Still one of the areas has been identified on how the CQC can engage with providers to help to drive that improvement.

Questions from carer forum members

One carer was interested that the Care Act 2014 was released close to 6 years ago and feels change is not coming far enough. The carer feels that things have been going backwards due to cuts in services and local services. The carer asked Susan why are things taking so long?

Susan agreed in stating that it shouldnt have taken as long as it should. She does feel that there is real focus on it now. Its about the relationships the CQC can now build and listening to people like us and having frank conversations.

I did mention that to be fair, I do not think it’s completely the CQC’s fault, because there’s many other organizations including the local authorities. I mentioned that this forum struggles in getting a local voice because we can never find who or what is responsible for certain things.

Another carer was interested in how do the CQC capture carers feedback about the service they receive?

Susan responded that we do try to speak to people when we go on inspection and they pick up on information about how to feedback. There is also a chance to feedback on their website.

Susan mentioned that they also want GPs to publicize how carers can give feedback or leave feedback. So that we can also look at that on inspection. So the CQC will look to see whether GPs have got a system where they invite and asked feedback. If they have got posters in the waiting room, inviting carers to give feedback about the care and service they receive. The CQC can even also monitor phone calls and emails that we receive. So we’ll be looking at those quite closely.

gp-surgery

One carer member fedback on her experiences with her GP and how she experienced qualify of care for her and who she was looking after. The carer acknowledged that we all know the mental health is the Cinderella of the NHS. So you can see how many in all these directions that things are falling on the the unpaid carer. Susan agreed that the carer made a really good point about that sort of twofold awareness of the GP needs to have. The GP practice needs to have about not only identify with carers, but how is the carer is getting on with the person they care for

Another carer agreed that the online consultation for obvious reasons, was not going to be sufficient and a lot of people don’t know how to go online. Even if their GP sent them some information, it might not be always easy to access or to understand what the GP or drugstore have liaised with.

Susan agreed with the carers comment about how the lack of mental health focus on carers literature and leaflets. One of the things the CQC like to check when we go into the practice to inspect is that there’s lots of information for carers and that’s visible and perhaps using different languages. Susan from the CQC is also going to find out if they have an analytical team at CQC that helps to provide Some data for the next forum.

I mentioned that the way I see this forum is that carers can come together as almost as an empowerment. Besides since GPs are businesses anyway. So i would be interested to have like a list of GPs to have some rating in regards to how they are responding to carers. Plus how they engaged with them and what sort of initiatives are set aside for carers.

One more carer spoke about the difficultly she had when the surgery stated that she needed to bring her ‘cared for’ into surgery. Even though she escalated it and got through the practice manager, the surgery still insisted they couldn’t do anything due to confidentiality and this led to prescription issues.

Susan stated that they’re not allowed to ignore complaints and that they need to acknowledge your complaint within probably a couple of days, and they need to investigate it. Because when a patient complains, or when somebody complains to practice, it may well be that there are elements of how they provide a service that are actually falling short, and they’re not going to improve unless they investigate.

Susan raised an example of that learning can be shared with members of staff involved, and she felt you should definitely continue to raise that complaint to the GP practice and they should acknowledge your complaint and also give you a sort of timescale about how they’re going to investigate. The CQC always encourage people to complain directly.

General Manager for mental health in communities discussion

Stephenie Edwards introduced herself to the forum as the General Manager for communities. They are in the midst of and have been for some time of actually starting to transform some of their community services. Over the years Stephenie has been attending some of the carer forums, but she is retiring now. So it will be the last time that we actually see her at the forum.

Stephenie continued that they were starting on creating pilots last year and they have been going out to service users and carers just to actually gain some views and thoughts. One of the things that was brought up was around waiting times, for both clients and carers. What they have done is that they were changing around their front end about services, particularly in that where they were splitting their services into neighborhoods. They piloted the split initially from last March 2019 for neighborhood 1, and what used to be their assessment and liaison service where people can be referred by GPS, is actually now based within the Waldren GP centre in Depford, and so their nurses are Mental Health advisors, application specialist OT, social workers based on site.

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Patients also go to other GP practices and they have what’s called a very quick triage. So GPs can request a service as soon as service users couldn’t be contacted if things were urgent within 24 to 48 hours.

Stephenie stated that they started in March two weeks into their pilot, but unfortunately they were hit with what the what the whole nation is dealing with the COVID-19 pandemic. This disrupted their systems and all of their plans. Still to some extent we were adaptive because they created groups to run from different sites and services, but at the moment, you can’t work face to face with people in group settings over time. To in some cases, online and the OTs are trying to work out other ways of working with service users that are face to face.

It was suggested by SLaM that the team launch another pilot for neighborhood three in Lewisham. Stephenie mentioned she was excited to say that she is going to meeting after this where they will be saying whether it’s safe or not to launch, neighborhood three. She anticipats it will be safe and start launching the day after the carers forum. The team have a new staff interface, that is a challenge to the launch. So what they have found Is that Deptford which is north of the borough is very different to South of the borough of Lewisham. One of the reasons is there are different communities there that they had to get to know in terms of meeting patients, but they are going around GP surgeries and asking if they can have some space to see people on GP sites.

Stephenie made a point that lots of people in the past, potentially felt stigmatized, by coming into community mental Health teams, we would have as much as possible we can see people just coming in for services within GP practices where you know, where where we can get, I think, any available space in GP surgery premium, but that’s what we’re hoping. And, and we have expanded or we’re in the process of psychological interventions for service users.

She feels this is a big thing because service users have told them for a long time that there needs to be more psychological intervention. And she thinks as it stands at the moment, we’ve increased our psychological retention by 15 new posts, however not all the people are in those posts at the moment, but they are recruiting to run the adverts are out. So there’ll be a lot more psychological intervention available.

That might be quite short term intervention or some longer term intervention, but it will be a standard model of care. So people will be assessed when they come in. And then from that assessment, it will be decided and agreed to what care plan and what an intervention would be best at that time for that person.

Traditionally, Stephenie’s team worked primarily with care coordinators who are managed care of a number of people, maybe 25 to 30 people. What she is having trouble with is actually recruiting nurses. And that’s been ongoing for the past four or five years. The thing is they have a number of vacant posts that they haven’t been able to recruit to repay agency costs equal to a higher premium. So when they have started to look nationwide, about how they can do things differently.

Questions from the carer members

One carer member was interested on who Stephenie’s successor would be. The CQC were also interested. Stephenie stated it was someone called Wendy Dewhirst she currently works in Southwark at their acute referral center. Wendy has worked for SLaM for a long time.

Another carer gave a suggestion that because one of the major things as people with mental health is, if they know this, their benefits is going to be stopped. It doesn’t take a genius to work out and it would send them spiraling. Some of them could end up being sectioned. That’s how bad things have got. Could you please have a specialist for PiP forms within the mental health team.

Stephenie explained that Bromley, Lewisham & Greenwich MIND are employed to help on this and they work with them. She mentioned they do a lot of work around benefits and are very skilled in it. They have also got vocational support staff and a lot of service users that they work with. Vocation workers themselves are absolutely experts in benefits, but the demand is so high that they can’t do that all themselves.

The carer replied that in the past a service couldn’t get help on benefit forms and that person just gave up. She knows it’s impacting mental health survivors and she knows this is going to have a knock on effect on service users which cause their mental health to deteriorate as well. Stephenie did admit that it’s going to get bigger with service users being furloughed maybe in October not having a job to go about, but she feels that’s where their vocation specialists will do all they can to help people retain their job.

Other carers are continuing the raise the matter of carer support workers, especially some years ago 2 SLaM carer support workers were lost and now no one has any understanding of carer support numbers. Stepehenie mentioned that a new carer support worker role will be introduced and mentioned this was a drive by Lisa Brian who heads adult social care in the borough. Denise O’brien is at the point of recruiting the carer support worker and they will be working with on strategy for carers in Lewisham. These adverts are going out either imminently or going out over the next four weeks. So it’ll probably take at least two to three months before carer support worker is actually in post. I requested that the advert also be sent to the group so carers can see what role the carer support worker will be employed for.

Another carer was interested in how community mental health services in the Borough of Lewisham were taking into account diversity issues of carers. Stephenie agreed that this should be a remit for all services across the country. She continued by stating Donna Heywood Sussex who is Lewisham’s Service Director has taken BAME issues very seriously and they are in the process of producing a BAME strategy. Plus they also have Leonie Down who is Lewisham Head of Occupational Therapy and Safeguarding Adults Lead working to engage the community and also get staff involved in the BAME strategy as well. She did state its worth asking Denise O’Brien to attend the forum to speak to carers about any carers strategy, but over the 5 years it has been difficult to get any insight into carer initatives in Lewisham and carers are wondering if there is co-production at a local authority level.

It was good news that the involvement lead will try again to get Denise to attend the forum and speak to carers about any initatives and we are really hoping things will be different this time. Lastly there was an update from Jane Lyons who is the involvement lead on getting patient systems to talk to each other. These being of patient records by with SLaM EPJs and GP patient systems.

This concludes the August update of the Lewisham MH carers forum. Next month 2 mental health trusts are to send their carer support leads to educate carers about the importance of carer peer support their carer peer support strategies.

Lewisham BAME MH Carer Forum July 2020

enteranceWelcome to the July update of the Lewisham BAME mental health carer forum. I’ve been doing this forum for many years now. As a reminder I run carer forums aimed at carers who are looking after those with mental health needs challenges or mental illness.

These forums are just a way for carers and families to get educated in regards to mental health services, or local author services. This forum is specifically aimed at those from the BAME community, the other carer forum I do is just more general mental health carers.

The BAM community have two specific set of issues Hence, the patients may end up using community servies, you know, high secure mental services. So that was the aim to sort of get them to have have an idea about the services created them, see what’s working see what isn’t working. For the July Lewisham BAME ME carer forum we have the Care Quality Comission (CQC) attending, plus regular carer members, along with Oxleas’s Community Development Service Manager and BAME Staff Network Chair. We also had in attendance SLaM’s peer support project lead and Damien Larkin who is a nurse who works at South London & Maudsley developing BETH the online patient health recording system.

The forum was also joined by Bromley, Lewisham and Greenwich mind Peer Project lead who offers support coaching up to £250 funding or people to set up peer support groups in their community. This is to help peers around mental health and well being, especially during this period of lockdown, but also beyond supporting people within the community around their well being and mental health.

Lastly the forum was also joined by Abby who works for lesbian refugee migrant network. They are one of the partners in the community well being service she is also the Community Engagement Manager delivering culturally mental health services.

Although the forum covers mainly Lewisham, we welcomed a member interested in BAME mental health groups and she is a Mental Health well being practitioner who also provides low level mental health support for children/young people under the ages of 25, vulnerable people going back into employment and business startups wanting mental health support.

CQC Presentation

To kick off the forum the CQC spoke about their role and answered questions. I invited the CQC down because I wanted carers and patients to develop more of a relationship with the CQC rather than the CQC engaging with users of services when inspections of services arises.

Quality-Care-Commission

Natalie Austin Parsons who works at the CQC meaning Care Quality Commission as an inspection manager spoke first as 2 CQC staff were present. Natalie was handed the role of engaging the forum because the previous CQC staff member Emma Mcfarlene only works in the directorate of adult social care, so they would inspect residential services for MH/LD/autism as well as nursing and residential homes and domiciliary care agencies. Emma suggested Natalie engage with us since Natalie works in the hospitals directorate who inspect in-patient and outpatient mental health services

Natalie was also joined by Susan Shamash who I have known for many year, were Susan attended my Lambeth Mental Health carers forum when they last inspected South London & Maudsley.

Natalie was kind enough to answer the previous queries I sent her before presenting to the forum.

The first question was on how does how does the CDC engage with slam? And how does it inspect and slam so

Basically they have a named inspector within the London mental health team. Plus they have a named inspection manager within the same team, that being herself. So we meet with senior staff within the trust regularly throughout the year, every two to three months. Face to face it was before COVID they generally would have those meetings at about 2 and or 1 and a half hours. The CQC would talk about previous action plans. So when the CQC came last time, they asked SLaM to improve this.

The CQC also get any kind of information or intelligence from absolutely anyone in the public who contacted them and if the CQC are concerned they will contact them immediately over email or phone.

The CQC use such information to see what’s going well, what are SLaM celebrating at the moment? What are SLaM working on that they they feel really proud of. And that’s really important to remember that there’s lots of things that could be improved in every trust, but there are also things that they’re doing a great and that’s how often the CQC tend to meet them face to face.

The CQC usually have contact with SLaM’s the director of nursing and director of quality. It’s only half an hour meeting every those every two weeks, but there’s a lot of turning in for information.

The CQC also have focus groups throughout the year if there particular errors or teams that the CQC haven’t heard from them for a while, or they want to hear what their improvements are while they’re doing well. The CQC will invite them to attend, but it can be really tricky, as Mental Health staff are really busy and realistically, who wants to go to a CQC focus group sometimes that’s not everyone’s first choice activity.

There will be some changes in how the CQC inspects SLaM due to a change in methodology. The CQC used to do a lot of engagement just prior to an inspection period, but now we’re looking at trying to spread that across the year rather than all in one concentrated amount.

The CQC respond to the first set of questions from Carer members 

The CQC gave the forum space to question them about their first response to my query. A carer member noticed a criteria that caused problems due to getting access to mental health services. The carer felt it meant that less people are getting services. Therefore, you could argue you’re going to get a better output because you’re dealing with a small amount of people getting access via MH service from their GP, which could lead to a false economy of patients quality of service within the mental health trust.

The CQC acknowledged the concern and stated it was a really important point. The CQC are always open and welcoming to any ideas. on how do you think that the CQC could do to help services improve.

The carer suggested sampling on how many people that got rejected for mental health services against those that was accepted. So to see within those within that range who they are, and then do a comparison, and see if there’s any within those samples of rejection and actually had similar cases.

The CQC noted that it was outside of what they would do for an inspection, however they are to happy to feed that back into their colleagues that go into GPS because the ones at this forum inspect mental health trusts only. This was a very important development as the forum is examining how GPs engage with mental health carers, especially if GPs are the first port of call for patients or carers during a mental health crisis.

Another question from a carer was about when the CQC come to South London & Maudsley how do they look for equality and diversity regarding carers? Because the carer has never seen you when the CQC show that in their report. The carer wanted to know if there is anything regarding carers, The carer also asked about queried that there’s never anything regarding carers or support on it. So how do you they show the quality regarding carers. This question was interesting since a mental health carer policy the Triangle of Care wanted the CQC to acredit such inspections regarding services to carers.

Again the CQC admitted that it doesn’t often come through in the reports very much even in the narrative. This is not only in slam but all the other mental health trusts, which the CQC will go away and report that to their team. The carer was also concerned about measurements of stigma and concluded that when it comes to mental health people have got stigma, especially the BAME community. If the BAME community can’t see anything from the CQCs report then they feel that you’re not interested. How can you be supporting us? If you’re not showing what you’re doing for us?

The third question from another carer member was a suggestion mentioning with regards to doing some measurements. Could the CQC not start with an existing data? Are they looking at historic data or working from the bottom as a starting point?

The CQC responded that this is something that they would do. The way they probably go about this is to have the mental health trust to do this. The CQC would ask the trust if they have the data? And if they don’t have the data, why do they not have the data? How do they analyze the data? And what are they doing with it? Have they made actions realizing that they could or couldn’t be doing something better? So certainly there’s work that the trust will have data that they can use to analyze this, but there may well be other areas that they could collect it.

The CQC present on my second query

The CQC responded to the forums questions and moved on the my second query I raised with them before they engaged with my BAME carer forum. The second query was on “How does the CQC engage with patients and carers during an inspection of a trust?”

The CQC presented that as standard when they come and visit a trust as large as slam, they divide services that it provides into something that the CQC would call core services. So examples would be adult inpatient wards. And slam have a number of those adult community mental health services, children, community mental health services, and substance misuse services if a trust provided. So those are examples would be wide across borders, and across all trust, and then the CQC write a final report for the core services.

There can be some difficulty if you are wanting to find out about a specific Ward or a specific team, and it can get quite lost in a report sometimes. if the CQC finds one Ward, or team that is doing particularly well or bad, then they will write about that in the report. But generally, across the trust this team, this type of service is doing well in this area or it could be improved in this area and then if the CQC need an improvement, they put it across the whole Trust.

Later on they inspect the trust about that improvement and in the report, the CQC have the five questions. So is it safe? Is it effective? Is it caring? Is it responsive and is it well led.

Experts by Experience

When the CQC come in with a team of inspectors, they are joined by professional advisors, who are currently working in that in that type of service in another range of interest. The CQC come in with experts by experience who have used that type of service themselves. The CQC do have people who are carers and who come in as the expert by experience as someone who is cared for a loved one with a mental health difficulty. Unfortunately the CQC don’t have many carers, the CQC have more people who have personal experience and the CQC would always welcome many more carriers to join that process as an expert by experience.

When the CQC come in they interview staff, they look at case records, they look at the environment, they interview service users. And the CQC do try to interview carers.

The CQC admitted that they think this is where they could do a lot better. The CQC request the contact details and the consent to be contacted by them through the trust, which the CQC think can be one of the barriers, they can’t just request a list of everyone’s names connected to services and then call them out of the blue. And so so that makes it a bit a bit trickier. Obviously, not everyone wants to speak to the CQC as well. Not everyone knows who the CQC are what they do. And that that again can be a barrier. The CQC collect all of that evidence and they make a judgement about specific things, you know, medicines appropriate training. So, that’s kind of an overview of how they do an inspection.

Inspection during COVID

Because of the COVID situation, the CQC are adapting the way they work at the moment. So they actually will give them longer time to spend talking to carers and people using services by telephone or maybe conferencing software.

The CQC then paused the presentation to give carer members a chance to raise questions on that subject. I won’t go into too much details about the questions, but they were very good regarding

1. How the CQC can gather patients and carers to hear abour services.
2. The problem of BAME carers worried about COVID-19 and how this will be captured in reports
3. More questions regarding sampling and data.

The CQC then presented on how well SLaM had performed during the last inspection and also responded on how well Oxleas has performed since Oxleas usually attend this BAME forum at times.

SLaM Peer Support lead presents

Next up we have the Peer support lead for the trust present on her role. Her focus at the moment is around making sure that we get more peer workers, working people, workers or people who have lived experience of mental health. And they are trying to make sure that we get peer workers working in all different departments of SLaM. This is so they can offer the lived experience and support people in navigating through the mental health service and navigating their way through recovery.

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SLaM have is what she mentions is a values based measurement, which means that they train peer workers to work to a set of values. Those values are the value of lived experience, developing safe and trusting relationships and strength based approach, anti racist, anti oppressive practice.

Training Peer workers

The peer lead continued that they train people and they do an eight week accredited training. They want to train people who have lived experience of mental health and who have used services. It’s really important to say that just because someone’s got lived experience, that doesn’t mean that they’re going to be good peer workers, you need experience to be a peer worker, and for having lived experience doesn’t make you a worker looking for loads of skills and qualities as well including communication, kindness, and the team working at able to support people with certain kind of recovery.

So what SLaM are looking at is a quite a wide skill set, so SLaM train people for eight weeks and then after that, they are working with teams to see where SLaM can have vacancies. At the moment, a lot of her work is trying to to transform their vacancies into pure workarounds. So maybe they’ve got a vacancy for a support worker, and see if we can transfer them to that team.

Carer members raise queries

There was a large number of questions from carer members one was on what support was given to Peer workers in such a demanding role. This being clinical supervision or regular support, support from line managers, etc, because there may be the sharing of quite challenging information

The peer support lead responded that peers get the same support as any member of staff and will have regular supervision with a line manager. Access, reflective practice, team meetings, whatever it is anyone else can do, but will also be put in regular supervisions that will be facilitated by someone who’s had experience of using their lived experience in the workplace, and which SLaM will ask all our new workers to do.

I also raised a query on why there is either a lack of carer peer supports or none at all, especially if service users get the majority of peer workers, peer befrienders, peer supporters. Carers are also using services, so where are all the peers?

It was noted by the peer lead that it has to be an evidence based initiative. So we need to have the evidence before they can start rolling it out. And at the moment, SLaM has evidence in regard to people with lived experience. So we know there’s loads of informal peer support that goes on for carers and meetings like this, but also just people getting to know one another. In her view, there probably will be. And I can’t imagine why wouldn’t work, with peers is supporting one another. Unfortunately at the moment it doesn’t look like SLaM going to follow that path.

Oxleas responded that they have a different view of carer peer workers than SLaM. Oxleas also have lived experienced practitioners who work in the trust and they have trained, experienced practitioners who have been carers, so they have broadened it so that includes anyone and the way that the roles and then people are employed as members of staff. their lived experience is an added extra. So you might be working in the board or in the health care system, but you are there with your lived experience, whether you’re a carer or a service user, and then that is the extra that you add to the role. Oxleas disagreed that carers were seperated from peer evidence based because how can NHS staff even begin to relate to carers?

There was a big discussion on the nature of peer support and on the peer support projects especially on the peer project regarding peer workers being placed in the Emergency department of Guys and St Thomas’s hospital.

There was also a very good question from another carer member regarding peer support and someone in a crisis, I think it went like this. As in terms of peer support, it’s relatively more needed when, when there’s a crisis, when a patient presents to an acute Ward, and this may be their first very first experience of the loved one, and experiencing mental health, rightly or wrongly, whatever the case may be, that is where that peer supporter is needed.

Plus we had several questions regarding if the involvement register was some form of peer support or if peer support was utilised across the involvement register.

The peer support lead did note that there is a problem on the way that the service works and particularly mental health services is that it’s not a very holistic approach. So one of the questions will be that the services not providing care for carers because that’s not their role. The MH services role is to provide care for service users. The problem is this, we know that if you support caregivers, then that’s going to have a beneficial impact on everyone including the service users. She admitted there needs to be a continued challenging of culture on how peer support works. It was mentioned to approach researchers regarding peer support at Kings college, but the Institute of Psychiatry, Psychology and Neuroscience was also mentioned.

The discussion went on for some time, but I think I have made this a very long blog post. This is the July’s update for the Lewisham BAME MH carers forum.