Welcome to the February update of the Lewisham BAME Mental Health carers forum. The forum is aimed at black Afo-Caribbean, Asian and other minorities carers in the borough of Lewisham, however I am happy for other carers in surrounding boroughs to attend. The forum is run from Bromley, Lewisham and Greenwich Mind centre under the arm of Community Wellbeing.
The forum is more educational and allows carers to discuss with mental health service providers any queries about services. A high majority of the BAME community use mental health services and some of the issues are specific regarding race, culture and even language. The issues are complex and deep, but discussions, forming relationships, education and working together is the way forward.
For the February forum we were blessed to have an outreach ad support service engage with the forum. The service was called OASIS and they kindly provided a workshop for the members of the forum. OASIS is a mental health service for young people (14-35 years old), living in the London boroughs of Lambeth, Southwark, Lewisham and Croydon. They provide support for up to two years, for people struggling with experiences like hearing voices or feeling paranoid.
OASIS ran a workshop for the forum, which was on ‘Psychosis and Unusual Experiences’. Many members of the forum in the past often asked for more education on psychosis. The members wondered how Psychosis affects the person they care for. So I was really glad that OASIS stepped in and provided a lovely workshop for us.
I was amazed to see that OASIS came along with a patient to tell her story, which I thought was inspiring and left a great impression on me. It showed there is always hope no matter how difficult things became.
Back to the presentation and workshop. OASIS talked us through how broad the definition of Psychosis really is, but they broke down that term into a number of factors.
The presentation looked at how sufferers could get
Confusion and changes in thoughts
Changes in speech
Loss of motivation
Feeling like something controlling them
Experiencing upsetting thoughts
Paranoid thoughts and ideas
Deterioration in physical health
and a lot more.
This is not to say those who experience psychosis had all of the symptoms, but they are common among those affected by psychosis.
The presentation moved on to explaining the Early warning signs. This part of the presentation was so vital for carers as not all carers are alert to when someone if beginning to relapse or fall unwell.
Some of the signs were.
Memory and concentration problems
Again, its not like the person experience all the signs, but maybe some occur when the person becomes unwell. These early signs then eventually change to more difficult experiences shown below
Changes in perception – seeing/hearing things
Paranoid or suspicious thoughts
High sense of threat
Change in behaviour and functioning
So eventually the above then leads to full blown psychosis. I was amazed how well the group explained things so easy and I wished more members turned up to view the talk.
It was not always talking to the forum, we also did some fun quizzes to test our knowledge. Then we heard from the service user experiences. There was many thought provoking questions from the forum members which centered on cultural awareness and understand, but I still feel that the BAME community must also make steps to engage with services and not wait till someone becomes so unwell that they is no choice but to provide MH care.
No one likes things being done to them, so there must be some focus on what services we can use before we get into a situation where services are forced on us.
I have decided to advertise the event off eventbrite as well as getting support from SLaM to place up posters on their wards and out in the community. I cannot thank SLaM enough for being very supportive of the forum and continuing to engage with the BAME community.
For those who may not know, the Oxleas, SLaM and SWLSTG Mental Health trusts are working heavily with the community to update what they are doing for their BAME staff. I am glad the services is using this forum to engage with the community since diverse communities often query about staff and not always the service themselves.
Welcome to the first Lewisham Mental Health carer forum of the year. Before I do a brief update of how the forum went, I must say thank you to Carers Lewisham for hosting the forum for almost 6 years. As a carer I often mention to fellow carers that we must support our carer centres. Without carer centers then it is harder to keep the profile of carers at local and community level. Carers need that safe space, access to activities and a place for support. I am aware that so many carer centers are struggling due to lack funds, staff and resources, but my respect for the ones that keep fighting for carers will continue.
As a reminder the Lewisham MH carer forum works to give carers a chance to find out what the mental health and social services are doing for them in the community. The Lewisham MH carer forum is carer led, which serves as a message of empowerment, I always try to make sure families and carers understand the importance of inclusion, empowerment and a chance at co-production, which should be at the heart of Health and social care.
If someone is making decisions that affects patients and their families then they must include those views, if they cannot include those views then they must present what they are doing. Failure to include, co-produce or present health and social care changes leaves the community being distrustful and avoiding to engage with services.
This is precisely why we had SLaM’s involvement lead for the boroughs of Croydon and Lewisham attend to update the members on how things are getting along for involvement. Members of course were interested on the involvement updates regarding carers.
Jane Lyon who is SLaM’s involvement lead for Lewisham and Croydon updated us on how services in the community were progressing, she unfortunately had to miss the new Lewisham Mental Health Alliance lunch in order to attend the forum, but we were glad that she sent 2 advisory group members to attend the event.
A lot of discussion centered on the Ladywell unit as we also had Eunice Adeshokan in attendance. Eunice is the modern matron for the inpatient wards at Ladywell Unit. I have known Eunice for more around 8 years or more so it will be interesting to see what developments will take place on the wards.
Eunice took the time to explain to carer members of her role and how the profile of families and carers will be raised at the MH wards. She also updated the forum of the special Carers Champion event and how carer leads on the wards across the trust are working in line with trust carers policies and strategies.
There was a discussion about SLaM PALs (a way to complain, compliment or query), since members wanted to know how carers will have the confidence to ask questions regarding the cared for. There will be work to see how staff deal with carers on the wards. One important start is that myself and another carer will visit the wards to check what is standing out for families & carers as I raised something regarding information at one of the wards.
In the meantime, I also raised the query of when the Lewisham and Croydon Staff Carer leads meeting will start up again, however we are waiting to see if staff can take on specific roles for the groups again, it could be the Lead Occupational therapists.
The second half of the Lewisham MH carers forum focuses on the NHS Trusts draft carers strategy. This is something that could not possibly be discussed at a peer support group as members need to have an interest of NHS carer engagement. It takes quite a while to get carers to have an interest of trust strategy and policies and a longer time for them to query it. The problem is the nature of NHS services can say one thing and do another.
So we are glad that South London & Maudsley is working with carers to query their strategy, because strategies can be used to hold services to account or at least let interested carers know what the Mental health NHS is doing.
I went through the 7-page strategy with carers and spoke about what carers should have a special interest in.
The following important points of the strategy were discussed
The Care Act.
What is the Trust’s Changing Lives Strategy, Think Family Strategy and the Trust’s Quality priorities.
The importance of the Triangle of Care initiative.
Understanding the MH NHS Trusts Carer’s Charter
Using the trust’s view of what is a carer – in case someone is told that they are not a carer.
Querying number of carers since the draft points this out as a challenge.
The importance of diversity and how it relates to the Lewisham BAME MH carer forum priorities.
The trusts strategy aims
Explaining the trusts priorities
How the trust will Increase the number of Carer Champions on wards and in community teams
How the NHS trust will support the health and wellbeing of carers (A major challenge).
I was glad to see in the draft that the trust is looking to go forward and register in the Triangle of Care membership scheme. This of course will take some work and will be something a trust representative can take to the regional ToC meeting to be held at Central and North West London NHS Foundation Trust.
I would like to thank Carer’s Greenwich for also attending the Lewisham MH carers forum as I am working to set another carer forum for the borough of Greenwich where Oxleas MH NHS trust can engage with carers at community level.
In the meantime I have set up 2 carer led peer support groups for the borough of Greenwich in order to build a carer base.
This concludes the update for the Lewisham MH carers forum.
Welcome to my first forum update for the new year. The first forum is the Lambeth Mental Health carer forum, which took place over at Brixton 336 on the 23rd of January 2020. The Lambeth carers forum exists to give unpaid carers a chance to know what Health and Social services are doing for them and also what those services have planned.
Lambeth has some of the highest rates of mental health problems in the country and perhaps even further, it is important carers come together and ask why this is the case and what are the authorities doing about it. As you might already know, South London & Maudsley NHS Foundation Trust cover the mental health services in Lambeth and also in Lewisham, Croydon and Southwark, so he forum seeks to engage with the Mental Health Trust over the coming year.
More importantly, there are other NHS trusts serving the community in Lambeth and we had the opportunity to have Guy’s and St Thomas NHS trust Mental Health lead engage with the forum, more on this later.
The January forum was very well attended and word is spreading about the importance of the Lambeth MH carers forum, with the help of Lambeth Carers hub, unfortunately the forum took place at the same time of the SLaM carers committee, so some members had to send apologies.
At the start of the forum, we took time to go through the minutes of the last forum which was held over at Moasic Clubhouse. The forum was attended by Helen Hayes Labour candidate for Dulwich and West Norwood and also Lambeth Healthwatch who are seeking consultation from Carers on the future of Lambeth Hospital. There was a lot of discussion from the updates from the last forum.
Next we had a presentation from Caroline Sweeney who is the Mental Health Lead for Guys & St Thomas NHS Trust. You might not already know, but Acute NHS Trusts tend to develop, renew or plan mental health strategies, however both Kings NHS trust, SLaM NHS Trust and Guys & St Thomas NHS trust are working on their Carer’s Strategies as well. If you are a carer or are lucky enough to attend a carers forum, certainly inquire if your hospital trust is working on either or both policies and strategies, especially carer engagement/involvement policies.
For the Lambeth MH carer forum, Caroline updated us on G&STT Mental Health strategy. The strategy was not developed in isolation as the trust held six workshops in the past via the hospital and its community sites.
Their external workshop had a range of stakeholders including Service Users and carers, London Ambulance service other MH Trusts, CCG’s, Black Thrive, Oasis and Papyrus (youth suicide prevention), Lambeth Alliance and more.
Their Strategy contained many important sections being
Developments and Good Practice.
Linking to National Drivers.
Objectives of the Strategy.
Overview on Patients, People and Partnerships.
There were more, but due to limited time, we could only cover a few areas off the presentation.
GSTT Developments and Good Practice
The plans and targets for GSTT are
Improving partnership working with South London and Maudsley NHS Trust
Delivery of training across in-patient and community services
Development of improved assessment processes for district nursing
Improve experience of patients who receive Enhanced care
Development of primary care hub for adolescents
Implementation of the Children and Young People Healthy Partnership (CYPHP), probably due to GSTT children’s hospital (Evelina London Children’s Hospital).
Mind & Body and IMPARTS service
GSTT psychology service
Linking to National Drivers
GSTT Long term plan is to
Increase Mental Health Liaison capacity e.g. specialised MH nurses in Accute wards
Equipping Ambulance staff to deal with MH crisis
Importance of improving child and adolescent MH care
Commitment to reducing National Suicide rates (Zero Suicide national driver).
GSTT also have internal drivers mentioned in their MH Strategy.
These drivers were from audits and reports about Liaison teams and children services experiencing an increase in referrals, this was especially noted in A&E departments and long waiting times for those experiencing MH crisis are not helping.
GSTT Mental Health Strategy Vision and Objectives
A MH Strategy would not be much without its Vision and Objectives.
GSTT seeks to improve quality of care that it delivers to Patients, carers and families living with serious mental illness.
GSTT also seeks to support patients with long term physical health conditions and manage their MH needs
GSTT seeks to ensure their workforce has the right skills, knowledge and attributes to care for patients, their carers and families dealing with MH needs.
There were other things discussed in regards to GSTT MH Strategy, that due to time I have not mentioned in this blog post.
GSTT and carers
We did not have GSTT carers engagement on their carers strategy, but Caroline did cover some part of that stategy, that being the introduction of Carers Passport to identify carers.
Use of Carer network study days
Dementia specific Carer days (which is still under development).
Continued work on Alzheimer’s society and Dementia UK.
There is more in the pipeline regarding how GSTT engages with Families and carers, but the above is a start.
The rest of the forum was discussing on the rota for chairing the meeting and future attendees for the Lambeth MH carers forum. Many hope for the Helen can update the forum regarding carers later on in the year and for other MPs to engage with the group. Other members want engagement from Lambeth leads who run social services.
This concludes the update from the Lambeth MH Carers forum for January.
Thanks for dropping by. I am in the midst of compiling my new podcast on the experiences of carers, but in the meantime I thought to do a quick blog on looking back at what I have been up to in 2019.
As usual I have been continuing to run four carer forums each month for the past year. We have had a lot of support from the community and I can only hope it continues in 2020, because the groups will increase to another 4 and an extra borough.
However from each of the 4 carer engagement forums here is the list of those who engaged with carers
Lewisham MH carers forum (2019 speakers)
SLaM Hoarding Service
Roslyn Byfield is a trained Counseller and therapist,
Kathryn Hill (Director of England for Carers Trust)
SLaM Engagement lead for Lewisham and Croydon
SLaM Patient Advice Liason Service
Ruth Morgan – Clinical Psychologist
Aaron Brewer – SLaM Quality Improvement
Cllr James Rathborne – Lewisham Mental Health Champion
SLaM Head of Nursing
Lambeth MH Carers forum (2019 speakers)
Eva Klamerus on CoPE online resource for carers
Lead for Lambeth Hospital
Helen Hayes MP for Dulwich & West Norwood
Rebecca Martland researcher from the Institute of Psychiatry, Psychology and Neuroscience
Robert Stebbings the Policy and Communications Officer from Adfam
Older Adults and Dementia Operations Directorate
Southwark MH carers forum (2019 speakers)
Eva Klamerus on CoPE online resource for carers
Kings College Hospital Carers Lead
NHS Serious Incident investigator
Nicola Gunn Solicitors
Southwark CCG on their carers strategy
Rebecca Martland researcher from the Institute of Psychiatry, Psychology and Neuroscience
Lewisham BAME MH carers forum (2019 speakers)
Lewisham Police MH engagement lead
Eva Klamerus on CoPE online resource for carers
Lewisham CCG – queries on Lewisham carers strategy
SLaM PALs on SLaM Carers strategy
Table Talk on Older Adult community support
South Lewisham GP Practice PPG chair
SLaM Equality Lead
Errol Chambers SLaM Inpatient social worker
Clinical Team Leader for Lewisham Community Services
I would like to thank those who took their time out from work to engage with carers and carer representatives in those boroughs. Special thanks to fellow carers also managing to attend.
Just a quick note that there have been quite a few more attendees particular for Lambeth borough, but I had not managed to always blog those meetings in time.
Other things I have been busy doing in 2019.
Below are a list of events and activities I have been up to in 2019. The list is not in-depth because there are a lot of things I have missed out, but there is a link below each title which you can click on to read more about different events.
Lewisham Stakeholder event
Near the end of the year, I was happy to set up a workshop about carers at the Lewisham CCG stakeholder event. It took a bit of work, but many carers from Carers Lewisham supported each other and we all felt the workshop empowered us all. The Lewisham Mental Health Stakeholder event went very well and was attended by many stakeholders, partners and organisations also running their workshops.
The first London Carers festival took place over in the London Borough of Tower Hamlets. The event was planned by the Directors of Adult Social Services and other partners. The carers festival was very well planned with many community activites throughout the day. As we all know carers do much for almost next to nothing, so I was proud to attend and observe the festival. I hope the 2020 carers festival will go well and I am wondering what London borough will run it.
The Health Service Journal awards was a long time in the making, but I am not surprised because the awards cover the whole of the NHS. I was delighted to be one of the judges on picking which part of the UKs System Led Support for Carers and how those systems would incorporate, identify and empower carers. All applicants had excellent case studies, but can be only one winner which was West Yorkshire and Harrogate Health and Care Partnership, although Manchester Healthcare partnership was highly reccomended.
Carers UK (I often mention them) also had their annual conference on developments around the country for carers. I was delighted to be given a chance to speak at the conference in regards to carers empowerment, which I feel is a much needed thing for carers. Carers UK gave me that extra voice for that day and will continue to give carers that needed voice.
I was not able to blog the event, but I was happy to speak about the “Importance of BAME NHS Staff and the relation to BAME carers in the community”. The event took place of at St Andrews healthcare site. The site was massive and I felt like I walked 3 parks to get to their head quarters. The turnout was very good and the event was planned well. I am awaiting what the outcome is for 2020.
Service User Advocacy Exhibition
Bethlem’s Museum of the mind has recently put up an exhibition celebrating experiences and voices from the service user and carer community. Part of the exhibition showed my views on why carers should be involved in the NHS and helping to shape mental health services. After all, I have been involved at SLaM for close to 5 years or more, plus I am involved at other mental health trusts and probably counting. The Exhibition opening went smoothly and I have visited the exhibition several times.
The Royal College of Nursing has taken up the Triangle of Care a policy that aims to connect Health professional, Patient and Carer. The majority of input does come from MH carers as the culture of the health service centers around the patient, this can go double for the mental health system, so a policy from a carers perspective is a welcome result. Due to the RCN taking on the Triangle of Care, other avenues have opened up and one of them is the RCN’s involvement group, which I am a member of.
The reform of the Mental Health Act 1983 has been a long time coming and it was with pleasure to attend the debate of the reform of the MH act over at parliament. The speaker who led the debate was Neil Coyle MP for Bermondsey and Old Southwark (also a carer) . I hope MPs to engage with carers regarding the Mental Health Act as many carers worry the reform act still ignores their concerns.
National MH Nurses director forum at Warwick University
The National Mental Health Nurses director forum (sorry its quite a long title) is a major event in the stakes of Mental Health Trusts. I was happy to speak at the event and got a chance to meet England’s most senior Nurse Ruth May.
The facilities at Warwick University were excellent and I think I was very spoilt. I spoke about the importance of mental health carers and the influence families and carers can bring to the NHS. For 2020 it will be a very important year for NHS England especially with the promises government will bring to the table and the World Health Organisation’s Year of the Nurse and Midwife……watch this space.
I have very close links to the WeCoproduce CiC and have known them for a very long time. It is one of the many Patient and carer forums that has similar aspects to the forums I run.
I have known Jane McGrath for many years and she always amazes me with the sheer dedication and organisation of running national events. Due to the terrible events at Glenfield Tower, many people were traumatised from the incident and it was only a matter of time before West London community asked what an earth is Trauma. I attended part of the Trauma Matters event and you can see my blog about it below.
SLaM Annual Trust Psychology and Psychotherapy event
Psychology and Psychotherapy mean a lot to me and as far as I know SLaM runs an annual Trust Psychology and Psychotherapy event. I was happy to speak about the importance of Psychology and Psychotherapy at the event along with a patient I have known for a very long time.
Triangle of Care regional meetings (Kent & Medway / SWLSG )
NHS Mental Health trusts involved in the Triangle of Care policy often meet and discuss regional developments. Since I am on the steering group of the Triangle of Care policy, I feel it is so important to attend such meetings to hear updates on how many of the mental health trusts are working towards the triangle of care and engaging with Carers.
One of the regional events impressed me so much that I blogged about it, this meeting was chaired by Kent & Medway Trust.
Central and North West London NHS Foundation Trust host the next meeting, so I am looking forward to how things turn out.
As you can see this has been a busy year for me and I have only mentioned half of what I have been up to as a carer. Year 2020 looks to be an event bigger year for carer involvement and empowerment and I hope carer engagement to the forums I run continue, because without carers becoming empowered to query how services are, then the family and carer voice goes missing……
Thank you all that believed in me and other unpaid carers.
In 2007 I was sectioned under the mental health act with my nursing uniform in my bag. The whole experience of my first sectioning was shocking, traumatic, shameful and confusing.
I was taken by a psychologist, who I was seeing for Cognitive Behaviour Therapy, to the Emergency Psychiatric service because he was concerned about me. I was taken to a room with no windows whilst the psychologist spoke to the Emergency Psychiatric team. I remember feeling catastrophic, trapped and concerned that I needed to get to work.
I was then assessed by a doctor who asked me deep psychological questions which for me was beginning to open a whole can of worms and was traumatic and distressing. Through the whole assessment I kept thinking, I need to get to work – I can’t let the ward down.
Then I was left in the room by myself, I felt stressed and that the room was closing in on me. After what felt like an eternity to me, a number of people entered – I had no idea who there were and all I remember of them is their shoes as I was no longer looking up. In my medical notes it states that my speaking had become very slow and I was not responding to questions. My memory is that I was extremely overwhelmed and I just wanted to leave, go to work and no longer be asked anymore psychological questions that I couldn’t answer and were confusing my mind.
All the people left then after a short time returned to let me know I was sectioned. I went into sheer panic. I thought instantly that I would lose my job and never be a nurse again. I keep repeating – I will come in voluntary, you don’t need to section me. I had not realised that when they had asked me to go into hospital I basically had had no choice that if I didn’t say yes I would be sectioned. In my mind I just kept thinking about the ward I worked on, that they would no be able to find cover for me that day. When I realised I was sectioned I was absolutely terrified. One of the staff said don’t worry we will help you – that comment has haunted me and felt like a betrayal to this day because for me my situation became so much worse and I call the years between 2007 – 2012 my lost years.
I was taken up to the ward and a nurse read me my rights under the mental health act. I was so overwhelmed that the only thing I remember her saying was that if I didn’t take the medication I was prescribed by the doctor, it would forcefully be given to me by injection. I was completely terrified.
I rang the ward I worked on and told my manager what had happened, she was so compassionate and supporting she put on the phone the HIV mental health nurse that worked on our ward. It was her that with care explained my situation and where I could get help and support.
After this phonecall I was taken to a bedroom and searched. All I had with me was my crossbody bag which contained my keys, wallet and nursing uniform. When there got to my nursing uniform there noticed that the name badge and my watch had a pins on then to fasten to the uniform, they took them off and said they had to take them off me. I remember wondering why, it has never crossed my mind that I could use them to self harm. That action by the nurses, in a moment, had stripped me of my identity as a nurse, I thought I will never be a nurse again and my thoughts of suicide increased 100 fold. The nurses had not even considered what they were doing to me psychologically.
I was then left in a freezing cold room because it was November and the windows in the room didn’t close properly. Lost and confused I went to the lounge and it was a patient who asked if I was okay. She then made me a cup of tea, gaave me some of her own toiletries and explained to me how the ward and hospital worked. I will always be thankful for her kindness that day.
My first admission was 8 months long. In that time I completely deteriorated. I was forced to have ECT Electroconvulsive therapy with a second opinion doctor saying that I did not have capacity to understand the benefits of the treatment. But in reality this treatment made me think I had completely lost my mind. In addition, I was financially and sexually exploited by another patient, was deprived of my liberty and embroidery, thought I would never be a nurse again and was told by my eldest sister that if I took my own life I would go to hell. Though I was taken off section 3 in August 2008 sadly the whole experience increased my desire to end my life and for the next 5 years I became a revolving door of the mental health system.
However in 2012 I was sent to a therapeutic community where I was given 4 years of psychodynamic psychotherapy which has meant that in 2019 I was able to complete a return to nursing course.
Welcome back to another forum update, although this is not one of the carer forums I do, but a forum i usually try and attend over in West London. Yes, it might seem a bit of a trip to travel from south East London to West London, but I have been attending the West London Collaborative forum for some time now.
So why do I go all the way over there? To be honest, I am always interested in how mental health trusts engage with their communities, plus I am interested in how communities engage with the mental health services and commissioners. It helps if the community is very inviting and friendly and out of all the areas that have been welcoming and have a strong mental health presence seems to be West London community. The culture is different in regards to giving people a voice, but networking and finding strength in others is celebrated as many in society seem to find weaknesses in service users and those who support them.
A bit more about the WLC or known as “We Co-produce”.
Taken from their site “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 find braver solutions to health and social care challenges.
Usually when I attend, its Jane McGrath who facilitates the forum and has been doing so for a number of years. She is the CEO of “We Coproduce CIC”. Jane who has used the services of West London MH Trust places a strong emphasis on co-production and feels their should be an equal partnership being Patients, carers and health professionals.
Jane has a very high profile campaign, promoting and working towards the mental health of the community, although to my surprise Jane was away and we had two service user facilitators presenting the forum, which impressed me.
The reason why I was impressed is that the running a forum can be very challenging at times, you just do not know how things will run for time, or who will kick off (this is more of a polite way of mental health discussions sometimes becoming emotional). I was not going to do much at the forum, but when I saw how well and professional the 2 new facilitators were doing, I had to blog the forum off the fly.
In attendance at the forum where many patients, some carers including myself, the West London NHS Recovery college lead and also peer trainer. We also had in attendance Deputy Director of Nursing who leads on the Triangle of Care at the trust, the WLMHT Chaplin and also Representatives from the Local Mind centre as well as Trainee Clinical Psychologist. So you can see the facilitators had their work cut out. Sometimes I even see Carolyn Regan who is the CEO of West London MH Trust attend the forum, she often is smiling and very approachable.
On the agenda for the November forum was the discussion on how the Critical Voices Conference went. The conference was a 2 day event over in Ireland from the Critical Voices Network. The conference was held at University College Cork, and members of the forum attended and fed back to the attendees.
The conference looks into how psychiatry and psychology affects the community and 2019 theme was on challenging mental health systems: critical perspectives from inside out and outside in. The Keynote speakers of the conference was :-
Alison Faulkner, independent survivor researcher.
Anne O’Donnell, community educator/activist.
Fiona Venner who is the Chief Executive of Leeds Survivor Led Crisis Service.
Fionn Fitzpatrick, community development worker/ activist.
John Cromby who is the Professor of Psychology from University of Leicester.
Robert Whitaker, journalist, author of Anatomy of an Epidemic, founder of http://www.madinamerica.com.
We had a brilliant feedback discussion on what happened at the conference and a lot of talk was on Robert Whitaker’s view on the problem of anti-psychotics and the claim of measuring the chemical imbalances in people.
Robert Whitaker is author writing about medicine, science, and history. He has wrote five books, three of which cover the history or practice of modern psychiatry. The forum discussed the view on how psycho-therapy has been reduced as the medical model have taken over and the relationship between professional and patient has deteriorated.
Sally Gomme of the Wellbeing Network explained the issues with the Diagnostic and Statistical Manual of Mental Disorders and how so much emphassis was put on labelling mental health disorders and distancing people. It was not to say that medication does not work for everyone, after all we are all individuals, but the claim of measuring imbalances was to be challenged when it comes to mental health.
The discussion went both ways as some service users felt medication worked for them and and even though the side affects were horrible, at least it gave some hope. While others felt the medication can be a mis-use of treatment. Clinical professionals felt their aim was to help people recover, but did admit more work need to be done on therapy and access to therapy.
What quotes stood out in representing mental health activism.
The Critical voices conferences was a 2 day event, so there was plenty of workshops, presentations and sessions in which WLC members attended. If you want to see how big the conference was, please see the link below.
The forum attendees was set a workshop on quotes describing the importance of critical voices.
Famous quotes were shown from Franz Fannon, Henry Girdux, Angelia Davis, Antonio Gramsei and more. I chatted with forum Co-Facilitator Hannah Mcdonald (A Nurse who is the Royal College of Nursing mental health activist).about the quotes and as a group all fed back as a group on what quotes stood out for us.
Trainee Clinical Psychologist research presentation
I often observe how psychology and psychiatry engages with the community as all fields including psychiatry and psychology continue to develop and should be researched. We were lucky to have a Trainee Clinical Psychologist updating the forum on her research. So it was not always about Service user voice or the carer voice, but what we can learn together from the Clinical perspective.
Charlotte Martan the trainee clinical psychologist feed back the results of her research called “Implementation of a Service User and Carer feedback”. She talked to the group about Crisis Teams and getting feedback from those admitted to the Crisis house.
The outline of the project was
How NHS England felt that listening to people who use or care about the NHS can help understand people’s health needs better.
The research looked at
1. Are patients and carers willing to provide feedback about their experience of the service following discharge?
2. How do service users and carers who access care from ECATT experience the service
3. What recommendations for improving service delivery and quality are offered by service users and carers?
4. Is it feasible to implement a feedback system in a crisis team setting?
Using existing literature to draft service evaluation questions
present draft to staff in team meetings
Attend groups to get feedback
Feedback from Service Users
Where the WLC forum was updated on SU feedback
Feedback from carers
The WLC forum was updated on carer feedback. One thing that stood out was that the Mental Health trust’s patient database was not constantly updated with carer information, so it was hard for the researcher to find carers to get feedback. One of the attendees felt that the triangle of Care framework will counter this and will seek to improve carer identification and auditing.
Recommendation for implementing a feedback system
Recommendation for service improvement
Comments and suggestions
Overall feedback from service users and carers was positive about the service, although there were some areas of dis-satisfaction, especially on some service provision and lack of consistency in care.
Summing up forum
I would like to thank the facilitators who were kind and were happy for me to help promote the forum for the day. I certainly enjoyed some of the food the forum offered attendees, plus one of the patients brought showed some of his art, which fell out from the notes he was taking. I just had to take a photo in which he was pleased to show his work and he even offered to sketch a picture of myself, but that is for next time.
My view is that all mental health trusts and communities have a different style of engagement, one way of engagement might not work in another area of the community, however when I travel to a part of London where there are no Service User/Carer forums and the voices are silent, I begin to get suspicious as one quote stuck out during this forum.
“There’s really no such thing as the ‘Voiceless’. there are only the deliberately silenced, or the preferably unheard.”