Welcome to a brief update of my South West London carers peer group. The reason this update is brief is because we had no speakers planned to attend and sometimes carer members just update on their situation.
A quick reminder is this group is aimed at those who are caring for someone with serious mental illness, they could be using the services of the local mental health trust South West London & St Georges or perhaps the person they are caring for is not in recipt of services. The carer group is a peer, engagement, networking and empowerment group covering the 5 boroughs SWLSTG covers (Richmond, Wandsworth, Merton, Kingston & Sutton).
For february we had a very good turn out and some new members. Most of the discussion was on sharing knowledge to those new to caring or those who were not sure what support they could get.
As usual I wont report anything confidential between members, only when speakers talk about issues that those unable to attend can catch up on.
Fast forward to May and engagement has been increasing between my groups and engagement from NHS England & Improvement and the local Healthwatches. Even if members struggle to feedback, they can at least understand what are the important issues of the day.
Welcome to my latest blog post. It has been a while since I have uploaded a poem. I have written close to 65 poems on the carer experience since the start of this year. Slowly a fair number of poems will be uploaded to my YouTube Playlist. The poems will play by themselves.
This poem is quite dark, but tells an often all too familiar story where the carer is trying to care for someone who has relapsed into mental illness. There are no beds or resources for the person who is very sick and thus the carer is confused on what to do. She will stick it out and try and cope as she watches her ‘loved one’ descend into madness.
Confusion by Matthew McKenzie
I sit and wait wondering what is next Too scared to look at whats before me The phone sits on the table, i am not sure who to call I just dont know…I have tried before
The sounds…so distressing, so much is on me but time is going so slow as my mind torments me I look at him as his eyes look straight past My heart sinks as my mind is harassed
Minute by minute..hour by hour Not a word heard or a form of contact I sit and wait wondering whats next confusion takes me and I cannot find the solution.
Nafisah Nabi a PhD student at the University of Mancheste is working on a PhD research project focuses on exploring the barriers and facilitators to recovery for South Asian service users within IAPT services. Nafisah is looking to recruit a Patient and Public Involvement Group who can offer feedback on research plans and study materials.
Please see the poster below. You can contact Nalisah at nafisah.nabi@postgrad.manchester.ac.uk
Back again with another blog post from unpaid carer Matthew McKenzie. I run many carer peer groups and forums and it has been a while since I updated on my SW London carers group. This is because I have been very busy working on my new poetry book for 2022.
Speakers for January Karen Persaud – Involvement project Discussion on speakers for the year Matthew McKenzie – Involvement comparison
Karen Persaud Presents on SWLSTG involvement project
Karen come from a caring background and has been a carer for 14 years. Karen was impressed with the stories that have been shared at my group and felt they related to her at a deep level. Karen explained her past work as a carers champion and the work she did with the Royal College of Psychiatrists on formulating the Community Mental Health pathway, the Mental Health Act review and a few other bits and pieces she got involved in.
Karen felt she could actually influence the way carers were being treated because she was often ignored as a carer in the past and wanted to make a difference. In the long run Karen ended up having to make a lot of formal complaint and even though things were slow going through the formal complaints procedure, she felt thats when things were changed. All this ended up where doors were slowly open for her.
Now Karen is working with SWLSTG it has been quite inspiring. Karen added that she is in awe of what Matthew does especially his commitment and how much he actually takes on and actually gets done.
Karen thanked the carers group for having her and that she was really pleased to present what SWLSTG involvement team has been getting up to.
Karen mentioned about involvement team. The recruitment and the in patient involvement of people with lived experience of mental distress in developing services for the for the vocal trust in the community. What Karen is looking to do is involve from basic involvement to full Co-production as much as is humanly practicable.
The team has grown over the last year. Since she has only been there for a few months at the mental health trust. Karen then explained who was in the involvement team and what day do.
Karen mentioned that she is also passionate about, one of them being CAMHS which is child and adolescent mental health services, but not something that she is directly involved in at the moment.
Since Karen only just started work she has noticed the involvement activities slowly increasing where they have now got six peer support workers who have started, one of whom is a dedicated carer, peer support worker, and her name is Zoe Hannah.
Members of the group asked why should carers be involved which lead Karen to explain the following.
Carers have a unique insight that can help shape a more appropriate recovery plan
Carers are more than a point of contact, they play a vital role in patient and service users recovery.
Carers will often be responsible for managing medication, accommodation, finances and a range of other social, emotional and healthcare needs.
They may not be clinically trained so it’s crucial that they are supported.
Carers are a vital piece of the puzzle and their health and lives are impacted by their responsibilities
SWLStG is committed to improving the experience of carers and supporting carers, supports patients and service users so improves outcomes.
To show SWLStG commitment, we invest in resourcing and embedding quality standards and processes outlined in Triangle of Care, Carers Engagement Thermometer, NSUN 4Pi in addition to NICE Guidelines and CQC Regulations.
Matthew presents on carer involvement
Since I am mainly on involvement at South London & maudsley, I wanted to compare how involvement was developing at another mental health trust who is part of the South London Partnership.
This part of the group where we want engagement on how involvement works at other NHS trust and I recently asked this off my local mental health trust in regards to involvement as a form of comparison.
I pointed out to the group that one of the worst aspects of being a carer is to be isolated and uninvolved. This means not on being involved for caring for someone, but being involved regarding changes to health & social care services.
The idea basically, you know, one of the worst aspects of care is to be isolated and uninvolved when I say uninformed, I mean getting involved in, I suppose veteran services Metro services not just involved in regards to the care of someone, but how services work and given their ideas and learning from other carers who’ve been involved just as what Karen presented before.
I explained to the group that a good involvements structure easily shows a bird’s eye view of services, and how it reveals involvement for both patient and carer.
The picture above shows an update on the projects showing involvement in the Southwark mental health services. I showed involvement updates and structure for some other services, but felt carers should do the same regarding SWLSTG.
This is the update for January for my SW London carers forum.
Elizabeth Tuudah is looking for unpaid carers from the Maudsley for her PHD study. The study is to better understand your experiences of holistic care at the Maudsley clozapine clinic. Holistic care is care that addresses the whole person’s needs (e.g., mental and physical health) and involves different health professionals working together with you to provide person-centred care.
The experienced-based co-design (EBCD) approach involves bringing together service users, carers, and staff in a series of events to improve healthcare services. The EBCD approach has previously been used to redesign both mental health and diabetes services to improve service user and staff experiences.
This poem is number 9 of the new book I am working on regarding the experience of care expressed as poetry.
I am looking at that clock again Tick tock, tick tock The sound is driving me crazy Tick tock, tick tock
His in the ward again, being detained It has been weeks now, and I am going insane All these thoughts rushing through my brain Wondering when if things will ever be the same
I think I will sit down and watch the TV Maybe if I put something on, the time will pass easy My brain hurts and my stomach is queasy Oh when will they ring, so someone can inform me
While the TV is on, its only been 20 minutes Nothings good worth watching and I am hitting my limits The sound of that clock, its making me fidgit Maybe I ll head out and see him on one of my visits
Oh I don’t know. Why am I doing this I rang them ages ago, something is amiss I grit my teeth, have a frown Something needs to turn around No one is calling My heart is falling My patience is gone and I am about to start bawling
Welcome back to another blog by former mental health carer Matthew McKenzie. I have an exciting project which black families could be interested in.
Black Families Involvement in New E-learning (Be FINE), is a new study funded by the Economic and Social Research Council, as part of UK Research and Innovation’s rapid response to COVID-19 and is led by Dr Valentina Cardi and Dr Juliana Onwumere at King’s College London.
The study has two aims. Firstly, to understand the experiences and impact of the COVID-19 pandemic on the carers of children and young people (6-24 years) from Black minority ethnic communities in the UK. The second aim is to explore with carers of children and young people from Black minority ethnic communities, the type of information they would find helpful to include in an online course that aims to offer carers skills to support children and young people with their mental health and wellbeing. The Be FINE study will employ a mixed methods design, using both online surveys and individual and group-based interviews.
The study has two parts; an online survey and focus groups. To participate, individuals have to be parents or carer of a young person from a Black racial minority and the child has to be aged between 6 – 24 years. We then ask that the participant fills out the online survey, this should take around half an hour. The participant will receive £15 amazon voucher for participating. Following this, the participant will have the chance to also sign up to the focus groups. These will last around an hour and the participant will receive a further £15 amazon voucher for this.
Black communities have been disproportionately impacted by COVID-19. We hope the study findings will aid the development of a more in-depth understanding of the experiences of Black minority families during the pandemic, and of what type of help, delivered online, might be perceived as beneficial in empowering carers to support the psychological wellbeing of children and young adults.
Below is the Link to the survey people can take part in.
Welcome fellow unpaid carers. I am involved in this exciting new study, where I feel it is very much needed to help shape mental health services. I hope members of my carer’s network or other carers who fit this role can also get involved.
We are looking for carers who support someone with mental health problems during hospital discharge. Please view the image below to get involved or email Dr Natasha Tyler via natasha.tyler@manchester.ac.uk
There is also more research carers can get involved in. This involves carers of adolescents or CAMHs services. You can also email ioannis.angelakis@manchester.ac.uk
Welcome to my February update of my Carers forum for Lewisham by former mental health carer Matthew McKenzie FRSA. This forum allows those who care for someone suffering mental illness to get togther, network, gather information and get engagement from Health & social care services. I also allow for particular speakers on carer empowerment, carer’s rights, advocacy, campaigning and discussions.
For february our speakers were
Charolette from Healthwatch Lewisham
Cath Collins from South London & Maudsley
The new Lewisham service user network
Plus Wendy Dewhurst who is the General Manager for Lewisham Community Services (SLaM)
Charlotte Bradford from Healthwatch Lewisham presents
As you can probably tell from my previous blog posts, Healthwatch tends to listen and engage with my carer groups every so often. I am thankful for healthwatch to also help promote my carer groups to spread the word. Charlotte who is a project officer from Healthwatch Lewisham remembered attending one of my carer groups before Christmas, and this is her first into 2022. Charlotte oversees a number of different reports that healthwatch Lewisham produce on a yearly basis.
The most recent one that they published on their website is the digital exclusion report. Healthwath Lewisham spoke to a number of residents to hear more about their experiences over the past 18 months with accessing health and social care services. This will help Healthwatch Lewisham look at what their priorities will be for this year. Plus they will be focusing on the next report where they will be conducting a number of interviews on visits to care homes.
Cath Collins – carers social worker updates the group
Where ever I go and engage mental health carers I often ask if their mental health trust have a focus on unpaid carers. It really helps if there is a designated person whose role it is to focus on unpaid mental health carers. Over in Lewisham, we have a social worker whose job it is to focus and support unpaid carers. Cath Collins is employed by Lewisham council, but works closely with South London & Maudsley NHS trust.
I am glad we have Cath to update our carer members over in Lewisham. Cath mentioned that as of this moment for inpatient mental health services for Lewisham particularly on the wards they are going through a process called the “Triangle of Care” audit, which is a very good practice when it comes to supporting the mental health carers.
In a nutshell, it was put together by a carer (Alan Worthington). The triangle of care policy is kind of like a checklist. So you have the six key areas to check whether you are mental health carer friendly on your inpatient NHS wards in your services.
All five wards at the (SLaM) ladywell unit are going through their submitted assessments, these being the home treatment team assessment, although she is still waiting on the psychiatric liaison team to submit theirs. Basically it is all about making them think on how they support carers. These things could be : –
How do they evidence that?
How can we how can they prove that they do that?
What information do they give people?
How do they involve people in the assessment of the person who needs support.
If the staff are carer aware and that they know about the needs of carers and the impact of caring?
Do they have a lead in their team who supports carers?
So the triangle of care audit is really thorough and even though it seems like an exercise it’s been really good. Cath mentioned it’s really sort of good practice on going on some of the wards and in some of the teams it’s helped them to highlight and really think about visitors be it the mothers, partners, brothers and sisters who come to the wards who support someone in hospital.
Cath also reminded my carers group about the carers support session that evening, which is run in conjunction with Carers Lewisham.
Linda from Lewisham service user network presents
Our next speaker to the carers forum was Linda Amoakohene who is the Sun Project Lead and Senior Occupational Therapist. Linda works for the Lewisham personality disorder service. She is also leading on the Lewisham service User network which is part of the Lewisham personality disorder service.
Linda was here to tell us a little bit about a new project. Even though it is new it actually was launched in October 2021. So they are still relatively new. The project is open to really anyone in the community of Lewisham who may be having some mental health difficulties. It doesn’t have any particular mental health labels even though the service Linda is providing is sitting within a specific service the personality disorder service, the project is actually available to anyone in the community in Lewisham. So whether you identify yourself as a carer or a patient of South London and Maudsley or just a patient of a GP or a member of the community. It is open access.
The Service User network is a peer support group. So people who attend the group come to get support when they’re in crisis, or perhaps they are struggling with things that impact on their mental health. So people end up self referring where they can come as often or as little as they like. Linda also mentioned that they don’t have to be under the South London and Maudsley NHS services to access the project, they could just be under the GP. There are also leaflets about the project or people email the team, and then they will send you the link to self refer to the project. So once the person self refers, they then make contact with the person on the phone, to find out a little bit more about them.
At the team they then complete something called a “Crisis and support plan”, which is basically applied to help someone think and plan, especially when things are really tricky. This can lead to questions on what sorts of things help or don’t help. This is so people basically go away with something that they can sort of use in a dynamic way, whenever they need it.
As of this moment, the project has got three groups a week, and they’re happening online. They might launch a face to face group since the COVID situation is obviously changing, and the government rules are relaxing, but they may still maintain some of the health requirements because COVID hasn’t gone away, and they still want to protect lives.
I thought to ask Linda a Carer question : Where I was happy about the new project and service, but I was interested in what support will be provided to unpaid carers.
Linda responded at length that this group is for anybody, they don’t identify carers or service users
Wendy Dewhurst from South London & Maudsley presents
Wendy apologised for being a little late due to just catching up from coming off another online meeting. Wendy introduced herself as the general manager for community services in Lewisham, which essentially means that she has the day to day oversight and operational management for all of the services in the community. So that’s the primary care teams, community mental health teams, early intervention, low intensity and the personality disorder. Wendy has been in the role about a year and a half and during that time, She has taken all services through the transformation into the new model, which they are now trying to embed an implement, which is an ongoing process and is not going to happen overnight. However they have certainly seen some good results, particularly at the front end.
Wendy answered a few questions from group, where she fed back concerns about access to mental health services. Currently, the access is by the GP, although she is in the process of setting up a mental health advice line which should be operational, hopefully in the next month, where people that have any sort of concerns can talk about a mental health crisis. The service will be manned by the mental health charity MIND.
So if following a conversation with someone who mans that line and they feel that the person needs a service then they can put you directly into that team. So it will be a sort of option for self referral. Wendy thinks that there will be some people that maybe don’t want to engage with statutory services like GPS and maybe don’t trust particular services, so it’s another option to get that much needed support and they very keen on being able to process self referrals. This so SLaMs (South London & Maudsley) primary care mental health teams have something in Lewisham, which is where they can provide the most appropriate treatment that’s the least intrusive.
So it’s an intervention that services which involve psychology, Occuptional therapy and mental health advisors from MIND. Where they will work in an alliance, SLaM will work with the local authority and Bromley, Lewisham & Greenwich Mind.
Wendy mentioned they have an enhanced multidisciplinary team, where they work very closely with the GPS in the primary care team, and the GP tends to remain as the responsible doctor. The enhanced multidisciplinary team and the consultant will focus more on serious mental illness and longer care term needs where maybe patient might be subject to CPA (care Programme approach), still the move is that CPA is going to not exist going forward.
Wendy gave a talk describing the CPA where it has certain sorts of conditions with it. This is where you have to review every six months, you have a care coordinator, social worker and psychiatrist. Although what they found is that so often people that were on CPA, all the care was focused on that, and people that didn’t have CPA might not have got the same level of care. So what they want is for everybody to have the same level of care, irrespective of of what what that is, so has the same rights.
Final update from Cath Collins
Cath reminded us that our mental health NHS trust has a carer’s strategy called the family and care strategy. This is what they are doing in Lewisham and are trying to make it Lewisham specific. So things that are in the carer strategy as a whole will be relevant. So making sure the wards and the crisis services adhere to that good practice of the triangle of care. There’s another priority about young carers, identifying those 18 and under who are caring for their parents or brothers and sisters. Other things like making that SLaM’s carer information is up to date and relevant for mental health carers.
Welcome to my latest update for joint Southwark & Lambeth carers forum. I have been unwell with COVID for the past week, but due to my previous vaccinations the affect was not so horrible. If I did not have the previous vaccinations I am sure the COVID would have been 10 times worse. If you are caring for someone vulnerable please get the vaccination as you cannot always avoid catching the virus. It is good to have some form of protection rather than nothing.
Speakers for my February forum were
Southwark Heathwatch
Lambeth Healthwatch
Kieran Quirke the Mental Health lead from Kings College NHS FT
Just a quick reminder, the aim of my carer forums is to allow unpaid carers who care for someone suffering mental ill health, get a chance to network and hear updates on what the services are doing for carers and for those using health & social care services. My carer groups cover half of London.
Megan Isherwood and Gosia Kaczmarczykfrom Southwark healthwatch presents
There have been a few changes over at Southwark Healthwatch and it had been a while since they attended the group and engage with unpaid carers. Megan who is the research and projects officer at Southwark Healtwatch gave us a quick introduction on some of their projects. Megan also let my group know how they could get involved with Southwark Healthwatch and their upcoming events.
Megan mentioned that there is a Healthwatch in every area of England, and they were created from the Health and Social Care Act of 2012. Healthwatch are a statutory organisation. Healthwatch are funded by the local authority that being Southwark council, but healthwatch Southwark are very much independent. Healthwatch Southwark hosted by community Southwark and has helped them to work closely with the voluntary community groups in the area of Southwark.
Basically Healthwatch Southwark want everyone who lives in the London Borough of Southwark to be able to access and receive the best possible health and care services appropriate for our diverse community. As a reminder Healthwatch Southwark are the independent champion for the patient voice.
So Healthwatch are here to represent the local community and make sure that services work for those in the borough of Southwark. So this means that they listen to local people about their health and social care needs and experiences. Healthwatch Southwark helps patients and service users voice their views and concerns in order to make services better and more suited to their needs. Healthwatch also have a signposting function. So they can provide advice and information helping people to navigate the very complicated health and social care system. Healthwatch knows that navigating the system can be a real maze, but as an extra form of empowerment they also promote patient involvement in shaping services.
This can mean helping people to get involved in health and social care decision making bodies and processes. Megan continued to talk about how their community engagement can lead to different ways for local people to have their say. Regarding generic experiences this can be both online and in person. Healthwatch also have the power to enter and view services, like GPS, hospitals care homes. Healthwatch can go in and observe them and find out the views of patients and staff.
Healthwatch Southwark connects with local voluntary and community organisations and work collaboratively with them. Healthwatch conducts research, and works on reports and give recommendations to health commissioners (Southwark CCG). Healthwatch also influences boards and committees particular the Southwark Council health and wellbeing board.
Healthwatch feeds into monitoring systems and consultations and they share these concerns with commissioners to make sure your voice is heard and to aid directly into influence change. Megan wanted to finish up her talk focusing on mental health, so she talked about their recent mental health services project. This was a recent report on the mental health services which is published their website site. It came about due to a workshop held in January, where lots of people attended, and there were representatives from South London & Maudsley hospital where they presented their formal response to the report. The report basically identified the key themes and areas that about unmet needs around SLaMs adult mental health community services provision where Healthwatch made recommendations to them on how to address these unmet needs.
The report involves carrying out a survey to find out people’s experiences of the services. Healthwatch focused on issues of access, waiting, suitability, impact and staff. So in the end Healthwatch received 81 responses, which was from service users and carers. The key findings were that the Southwark improving access to psychological therapies, which is IAPTs on if you’re talking therapies, and also the community mental health teams, which were the most used services, followed by crisis services, integrated psychological therapy teams and assessment and liaison services.
Since my carer forum tends to focus on wellbeing, the next section was from Gosia Kaczmarczyk who is Southwark Healthwatch Community Engagement Officer. Gosia did a wellbeing meditation session online for the group to experience. Gosia then went on to talk about the volunteering opportunities at Southwark Healthwatch.
Since Southwark Healthwatch do the enter and view programme. They are going to be working on induction training to train these representatives in the coming months. They will also be recruiting for community engagement.
Healthwatch will also recruit for committee health ambassadors where those interested can even become an advisory board member. Such opportunities can have an impact on how healthwatch do their work and what they are focusing on. It is like a really important part. Volunteers can also help guide healthwatch on their upcoming events.
Anna D’Agostinofrom Lambeth Healthwatch presents
After the talk and engagement from Healthwatch Southwark, it was now Healthwatch Lambeth’s turn to talk about what they do. Anna who is the Engagement Lead for Mental Health gave the carers an overview of what Healthwatch Lambeth does. Anna also reminder my forum that Healthwatch was established in 2013 as a charity, where each part in England has a HealthWatch. In fact there are around 150 Healthwatch organisation throughout England. Anna mentioned it was established to give the people a stronger voice on how health and social care services are really set up and in some cases challenge the way that they are actually run those services. This is why healthwatch really want to hear people voices.
Healthwatch contacts people, liaise with them and gather their feedback, and then they contact the providers to see how services can be improved.
As with what Healthwatch Southwark does. Healthwatch Lambeth does Enter and View – Where they visit commissioned services, interview service users and staff suggest how the service can improve. Healthwatch Lambeth also do Information & Signposting – they help people find the information & services they need and signpost them to organisations that can provide support.
Anna wanted to talk about a particular project Healthwatch Lambeth are currently running this is in regards to healthcare during the Pandemic.
Healthwatch Lambeth want to talk to people with mental health needs and their carers How easy or difficult was it for you to access healthcare? Did you get the support you needed? Where you offered an annual health check? Were you offered Covid-19 testing and/or the vaccine?
Kieran Quirke From Kings NHS trust presents
Kieran gave us a brief update from King’s College Hospital NHS Foundation Trust. Kieran admitted that since the last time he came to the group, a lot of the projects have been put on hold because the Omicron virius (a varient of the corona virus). It is only in the last couple of weeks, things are starting to get back towards a state normality however one of the first things to mention is that visiting the hospital is now back to to visitors or patients across the majority of sites, which is an improvement.
Kieran mentioned that Kings NHS trust can hopefully start moving forward on some of the John’s campaign stuff, which I stalled during the pandemic where the dementia and delirium team are leading. Kieran mentioned two important things to mention updates where the first was the launch of their butterfly Cafe dementia group, which is due to start on the 8th of March in the afternoon, and they have got a venue for that where it is going to be held at the institute of psychiatry, They have got a room within the lounge area. Where that will be running monthly.
It’s free to attend. There’s no ability to provide transport, unfortunately, but there is wheelchair access and there will be some refreshments. It is also going to be supported by KINGs NHS volunteers alongside some of their community partners. All they need to do is email in advance to say they’re coming where there is a bit of a chance to plan for numbers that is needed to provide for.
Another update is joint working with Mosaic clubhouse, where they come in and engage with some of their medical patients. This project was unfortunately delayed because of the pandemic. So it has taken a little while to get it back up and running. They are looking to launch in March, although it is a pilot and will initially work with four wards being medical wards. If there is a patient with a mental health concern, that is within the psych liaison threshold, The ward can then refer to Mosaic Clubhouse and Mosaic will send to a member of staff and a service user who will come and visit and spend some time with the patient and talk them about signposting Community Services, and then potentially revisit if need be, it’ll be on the medical wards, so there’ll be probably quite short, brief interventions. But that’s another really positive development.
The last update is that they plan to develop a new carers policy. This is one of those projects, which has been suspended and suspended, but hopefully now they will start to get the wheels rolling underneath it. The final update is for Matthew to get involved in KINGS NHS carers day celebration.
This is my update for my Joint Southwark & Lambeth mental health carers forum for February
A Caring Mind 