Tag Archives: NHS

Lewisham MH Carers forum January 2020

133Welcome 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.

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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.

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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.

Lambeth MH Carers Forum update January 2020

20140710_143445Welcome 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.

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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.

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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.

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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

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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).

Other drivers

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.

A Look back at 2019

10177241_747738765268892_5890142387668348507_nThanks 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
  • Lewisham Healthwatch
  • Lewisham CCG
  • 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)

  • Lambeth Healthwatch
  • 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
  • Southwark Healthwatch
  • Kings College Hospital Carers Lead
  • NHS Serious Incident investigator
  • Nicola Gunn Solicitors
  • Southwark CCG on their carers strategy
  • Southwark Council
  • 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
  • Lewisham Council
  • SLaM PALs on SLaM Carers strategy
  • Table Talk on Older Adult community support
  • SLaM pharmacist
  • 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

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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.

Lewisham MH Stakeholder event Link

ADASS Carer celebration festival 2019

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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.

ADASS Carer celebration festival 2019 link

HSJ Award Ceremony 2019

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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.

HSJ Award Ceremony 2019 Link

Carers UK annual conference 2019

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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.

Carers UK annual conference 2019 Link

St Andrews Black History Month event

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

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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.

Service User Advocacy Exhibition Link

Royal College of Nursing involvement group

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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.

Royal College of Nursing involvement group Link

Reform of the Mental Health Act Debate

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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.

Reform of the Mental Health Act Debate Link

National MH Nurses director forum at Warwick University

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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.

National MH Nurses director forum at Warwick University Link

Trauma Matters event

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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.

Trauma Matters event Link

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.

SLaM Annual Trust Psychology and Psychotherapy event Link

Triangle of Care regional meetings (Kent & Medway / SWLSG )

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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.

Triangle of Care regional meetings Link

Conclusion

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.

Lewisham BAME MH Carer Forum November 2019

Carers Nov2019Hello again!! Here is the Lewisham BAME Mental Health Carer forum update for November. This is usually the last forum I run out of all the 4 forums per month. The forum is quite unique as the other forums promote mental health carer inclusion and awareness in the other London Boroughs, but this one focuses on Black Asian Minority Ethnic queries. BAME carers and service users suffer a whole different set of issues in regards to mental health services. Most are complex, cultural and historic, but there MUST be some platform for important parties to discuss, network and work on these issues.

Another thing different between this forum and the 3 others is sometimes this forum is a mix of patients and unpaid carers. I often try and leave space for the Service user Rep or chair to update the forum.

Who Attended and spoke

For the November update we had a discussion from Pharmacist Della Bishara in regards to medication and its affects on the patient and how unpaid carers could and should be involved.

We also had a detailed presentation from Rachel Ellis who is from Table Talk, which is a new initiative that aims to help inform senior residents throughout the borough, with the help of volunteers. Table Talk provides leaflets, information and a table in order to engage with the older population.

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We were also joined by a number of unpaid carers and patients, along with a representative from Lewisham Homes, plus Metro’s Representative who provide one-to-one counselling for people who identify as LGBTQ and/or those experiencing issues relating to diversity, equality and identity. We were also joined by Lewisham CCG Engagement Teresa and also Natasha from Greenwich Carers who I approached to set up some carer groups. We were also joined by the rep from Community wellbeing from BLG-Mind who I will also bet setting up a peer support group.

On Medication

We had a very lengthy discussion on medication with Della. Many questions from the attendees she took away to raise at SLaM especially in regards to clinical trials and reporting on side affects. Carers need to be involved because of the patient might not always be able to advocate for their need, especially if dementia takes hold. I raised with Della if there were studies looking at medication effects on BAME groups and if there is a SLaM trust wide forum that engages pharmacist issues.

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It was mentioned that Lewisham Integrated Medicines Optimisation Service (LIMOS) is working in improving medication safety for older people. Basically LIMOS is integrated across the hospital, local care homes and community settings, which means that, if a care home resident is admitted to hospital, or vice versa, there is a seamless approach to managing medication.

As with the psychiatrists bible being the DSM, the pharmacists have an important book, that being the British National Formulary (BNF), the book is not easy to get hold of and is the UKs pharmaceutical reference book that contains a wide spectrum of information and advice on prescribing and pharmacology, along with specific facts and details about many medicines available.

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Della discussed the BNF in detail and how it can help pharmacists, which the forum played close attention to. The forum also discussed the issue of miscommunication of medication between hospitals, covert medication and the issue of control & release medication.

Table Talk presentation

After the discussion with the pharmacist, we moved on to another topic regading older ages people. This was the Table Talk project, which was presented by Rachel Ellis. Rachel has been an outstanding promoter of senior citizen’s causes throughout the borough of Lewisham and has visited a large number different venus in Lewisham this year alone. As mentioned before Table Talk engage with the public on raising awareness of activities, information and support for senior citizens. This is specially important due to the population is ageing as we all are living longer.

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Table Talk work closely with Lewisham council and with Age UK. The Lewisham BAME MH carer forum were shown several leaflets, which can help older people in regards to meter readings, warm homes, fire alarm checks and transport. We discussed how isolated older people can be in the community as Rachel described more information and leaflets.

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Carer led Support Groups

Lastly for the Lewisham BAME MH Carers forum. I discussed the importance of carer-led peer support groups. I will be setting up several carer support groups in a few boroughs. Usually the forums are strategic and engagement focused and there is not enough time to hear carer stories. In fact carer support groups are meant to feed into the carer forums for empowerment purposes, but there were only a few carer support groups in the borough and none carer-led, which means there is not much motivation for carers to connect with each other.

I will be setting a BAME and a general MH carer peer support group with the help of Greenwich carers for that borough and I was so glad Greenwich carers engagement and community officer (Natasha) came along and support me at the Lewisham BAME forum.

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This will be the same for Lewisham as we will work closely with the CCGs. The forum talked about how they felt about the Bromley, Lewisham and Greenwich Mind peer support group event that was held on wednesday the 27th over at York Hall in Beckhenham. We are very glad that they are able to fund that startups of the groups, however I pressed that we do not really need the funding, it will be the passion, drive and connection that can help, not to say funding will not be helpful.

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With Lewisham CCG engagement, the forum has been aware of NHS England’s long term plan and we have made it clear they need to involve patients and carers in that plan. The good news is that the NHS England’s long term plan is beginning to take shape and involve us, but no matter what I do, I want to connect with carers and make them aware that the health system is trying hard to involve them. I am not sure about the social care element, but at least with NHS England, there looks to be some very good and exciting projects coming our way.

BAME Carer experiences Research

As promised I promoted a trainee psychologist’s study into African Caribbean experiences of supporting an individual with MH needs in a forensic setting. She contacted me after reading my blogs to see other researchers were engaging with forums about their own research. The researcher feels there is not enough literature or research papers detailing such experiences and Lewisham CCG will follow this up with the trainee Psychologist studying at the University of East London.

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As usual I thank Kelvin (one of the proactive members) for setting up the talk with the pharmacist.  I also thanks Community wellbeing and BLG Mind for hosting the Lewisham BAME forum and thank Greenwich Carers for the support they have given me and look forward to exciting projects ahead.  I would lastly like to thank Lewisham CCG engagement officer (Teressa) and the other CCGs for engaging with the Carer forums and I am very impressed with the plans they are looking to involve us in.

This concludes the update for November and I will be preparing for the groups with the support of Oxleas and Greenwich carers.

Joint Lambeth & Southwark MH Carers Forum update November 2019

Southwark & Lambeth MH Forum 28-11-19Welcome back to a quick update from another Mental Health Carer forum. This one was a joint forum since due to the election candidates had to cover many areas to campaign and it was harder for them to visit each forum.

On Thursday the 28th of November, we had our Joint Southwark and Lambeth MH carer forum, which was held over at Moasic Clubhouse during the morning. The host for the joint forum was Carers Hub Lambeth who do an amazing amount of work for unpaid carers in the borough of Lambeth.

A bit more about Carers Hub Lambeth. Carers’ Hub Lambeth is an independent local charity based in Brixton, They seek to limit the dilemma’s placed on carers by two key ways. One way is by working with carers directly, and the other by influencing the local services and policies that affect them. Hence this is why we built up the Lambeth MH carers forum, which has been running quite a few years now.

We were also jointed by unpaid carers from Southwark Carers and a bit about them.

Southwark Carers try to make it easier for Carers to have a life outside of caring by 3 key areas, this is by Enabling, empowering and enriching the lives of carers in the London Borough of Southwark. Southwark Carers enabling service is a flexible, individual, personalised service offering support on a one-to-one, plus their empowering service provides carers with information and knowledge of their rights and lastly they help in enriching unpaid carers lives by offering leisure activities or by helping them return to training, education or work.

I was very proud that both groups of unpaid carers came together from both boroughs to be heard on issues affecting carers from the two boroughs.

About the forums

Both Southwark and the Lambeth MH carer forums work the same way as the Lewisham and the Lewisham BAME MH carer forums. The forum is not much of a support group (those are a different and complex animal), they are mean’t to empower unpaid carers who are active in connecting with other carers and the community. The way mental health services are run are complex and also a mystery. These services affect unpaid carers regardless of what anyone thinks. Unpaid carers should be empowered to know what is going on and why. Even then, that is not enough. Unpaid carers should be involved and not be a tickbox or an afterthought.

Where it took place

As mentioned, the joint forum took place at Moasic Clubhouse, which supports people who are living with a mental health condition in the London Borough of Lambeth. Mosaic’s approach is built on the internationally-recognised Clubhouse model , which embeds coproduction between staff and members throughout all activities.

On the day Helen Hayes (candidates for Dulwich & West Norwood in the 2019 general election) visited and engaged with both patients, staff and carer groups to here about the good work they do and listen to burning issues or questions. Helen has been a long promoter of both carer forums and she has visited and engaged with both the Southwark and Lambeth MH carer forums several times already. She works tirelessly to represent the community and often checks up on how things are getting along.

Why it is important to have relations to MPs and candidates

I often felt that carers have a really tough time getting mental health services or the local authority to listen to their issue, which is why when unpaid carers get together, they should have a link to government representatives and a lot more. If there are forces that wish to drown out an unpaid carer concerns, then there is always a risk many would seek to avoid or limit the groups activities. Its not that unpaid carers want to moan or complain, its just they wish to be heard and be counted.

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As a bonus on why it is important for unpaid carers to get a voice in government circles. I have included Carers UK Manifesto on the General Election in the Link below and also Carers Trust’s Think Carer 2019 pledge.

Carers UK Manifesto 2019

Carers Trust 2019 Pledge

Discussions and agenda at the joint carer forum

You will have to forgive me as I completely forgot my notebook, so I did not note anything down.

I had built up the forums to help empower unpaid carers, so I was really happy to see another carer chair such an important meeting and I really hope many will talk about how impressed they were with her.

Helen briefed us on how Labour will strive hard to get the unpaid carer’s voice heard. Labour will strive to work on the Mental Health Act 1983 amendments, but she also mentioned that through years of austerity services had struggled, which in turn lead to difficulty in unpaid carers lives.

I mentioned to Helen my role at the Royal College of Nursing due to the amount of pressures placed on student nurses and nursing in general, we really hope the government will seek to support not just patients, but nurses and unpaid carers. The NHS has taken blow after blow due to lack of foresight and lack of investment, although the intention has been good, intention alone is not enough and too often the social care angle has been kicked down the road.

I have also added RCN’s Safe Staffing Saves Lives link below.

Safe Staffing Saves Lives

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Up for discussion was also the impact of the Care Act 2014 as many unpaid carer was left wondering, what difference has it made since more services were drawn into the local authority and grassroots carer charities have been striped of their power, were funding has been cut and staff at carer centers told to do more. From what I have noticed, it has been a complex web of bureaucracy and deceit where heads and directors of social care are not engaging with groups and make decisions without hearing the stories of those affected by those decisions.

Many unpaid Mental Health carers are wondering what bite does the Care Act 2014 have, when very few are aware what it is meant to do, which probably it is aimed to highlight and protect carers rights.

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There have been situations and stories where the Local Authority gang up with mental health services and push the family or carer out of involvement for the cared for. It is like the carer is not a professional in their own right and the law see’s it that way. Nevermind the peer support, services can and often collude with each other to drown out the struggles the carer or ‘cared for’ may have, which is why we as a group look to the politicians to not only represent us at government, but bring us along in the journey.

If things go wrong or nothing gets settled, then we carers are a patient lot, but we must try and try and try again using different methods.

Lambeth Carers Strategy

Up also for debate was the Lambeth Council’s Carer’s Strategy and how things were forming on the councils responsibility to its unpaid carers.  I have always been a firm promoter that local authorities engage with carers on what they are doing for carers.  It is not enough to assume strategies are too hard or complex for unpaid carers to get involved in.    Even if the carers strategy does not amount to much, at least it raises awareness of unpaid carers and is a way to hold the council to account.  There will be an update on Lambeth’s Carer strategy next year, but I am interested on how other council’s strategies are developing or if they are non-existent.

Lambeth Healthwatch

One method was through Healthwatch, which works to ensure local people’s voices count when it comes to shaping and improving local health and social care services. As with Lewisham Healthwatch, the joint forum was joined by Lambeth Healthwatch due to the proposal of the closure of Lambeth hospital.

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The discussions were well thought out and there was alarm among unpaid carers about the distance and proximity of services moving to Southwark. Even when Lambeth has very high rates of mental illness in the borough we feel there has not been the paper trail of consultations and get the feeling that the Lambeth hospital closure is a done deal. Many still understand that the hospital is not fit for purpose, but cannot understand why Southwark is slowly draining access to services away from Lambeth.

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There was a lot more in the discussion, which unfortunately I cannot remember now, but Lambeth Healthwatch will certainly take this back to the council and CCG. We await updates in the new year. We as a forum continue to seek a relationship with the Healthwatches and other parties including the CCGs, we do not want to make life hard for the decision makers, but we do need to be involved, empowered and heard on specific issues and queries.

No matter what government gets in power, we as unpaid carers will strive to get our voices heard due to the nature of our cause and struggles. It is only fair that what we do for the love of our ‘cared for’ and the ‘community’ that we should not be ignored.

Lewisham MH Carers forum November 2019 update

Mental Health Open ForumWelcome to my quick update of the Lewisham Mental Health Carers forum. This forum runs usually on the last Tuesday of the month and runs from Lewisham’s Carer’s centre. The forum looks at the issues affecting unpaid Mental Health carers in the borough of Lewisham and sometimes further beyond.

The forum does not look into the mental health of unpaid carers, but the situations of families and carers supporting someone with mental health needs. A bit more about the Charity ‘Carers Lewisham’. From their website.

Carers Lewisham provide a range of services including advice, information, emotional support, breaks, opportunities to meet other carers, relaxation days and well-being sessions, coping strategies, specialist support for parent carers, carers of people with dementia, carers of people with mental health problems, older carers and carers who are caring for someone nearing the end of their life.

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As you can see, families can have complex relations and unpaid carers are no different, unpaid carers need that support, but they also need empowerment. This is what the Lewisham MH carers forum tries to provide.

The Lewisham Mental Health Carers forum runs once a month, just like the other 3 carer forums I try run. All MH Carer forums run in South London, but do not be fooled into thinking I just run forums since my activities spread much further than that, e.g. helping out Mental Health carers in other boroughs where mental health NHS Trusts have some idea of empowering unpaid carers in their area.

A first for the November forum was the use of a telecommunications application called Zoom, which allows unpaid carers to attend the forum via Video Chat. I am still trialing the device and checking out the hardware, but I have made it clear to members that I am happy to train them in usage.

Updates from Healthwatch Lewisham

For the November MH Carers forum, we were glad to welcome Healthwatch Lewisham.

Healthwatch Lewisham is the independent champion for people who use health and social care services. They exist to ensure that people are at the heart of care, and they listen to what people like about services, and what could be improved. Healthwatch Lewisham share their views with those with the power to make change happen, that being the Local Authority, CCG or those who provide services.

Marzena Zoladz who is Healthwatch Lewisham’s Involvement and Projects Manager has been actively engaging with both the Lewisham MH Carers forum and the Lewisham BAME MH Carers forum. She was there to update the members on Healthwatches Intelligence report, which is about a summary of reports and actions that have been undertaken by Healthwatch, including information on what they are currently working on, what work they are planning and updates on work they have previously undertaken.

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Most of the members have already read some of the latest reports are queried Marzena on why some reports are not highlighting unpaid carers, but in the future Healthwatch wants to develop stronger links to families and carers. This is something the forum is looking forward to as many feel that those who they care for is at the mercy of the health services.

You can look at more reports from Healthwatch Lewisham show below.

Healthwatch Lewisham Reports

Other queries from members were on the lack of figures and stats from the Local authority and from SLaM, many feel that SLaM Quality Improvement has a huge part to play in revealing statistics. A big query came from a member concerned that access to services via primary care is severly lacking. They feel secondary care focuses a lot more on those who have managed to use the mental health system, but those outside the system, it will be a hard struggle. There is dismay that Local Authority will be taking over more services in the area, which means it will be harder to raise queries to healthwatch.

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Marzena was kind enough to give out information leaflets, booklets, forms, pens and hygiene kits. The forum members took a few forms to feedback information from other services.

Updates from SLaM

Also at the November forum, we were joined by South London & Maudsley NHS Foundation Trust’s (SLaM) Involvement lead for Croydon and Lewisham. Plus we were also joined by SLaM’s Head of Nursing. Before I continue, a bit of info about SLaM. Since some people think they are some trend for a basketball team.

South London and Maudsley NHS Foundation Trust provides the widest range of NHS mental health services in the UK.

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They also provide substance misuse services for people who are addicted to drugs and alcohol. Their services include the Maudsley Hospital and Bethlem Royal Hospital. They also work closely with the Institute of Psychiatry, Psychology and Neuroscience and King’s College London.

They are supported by Maudsley Charity and are are part of King’s Health Partners Academic Health Sciences Centre. You might notice off my Southwark or Lambeth forums NHS Staff turn up from King’s NHS Trust or Guys & St Thomas Hospital to engage with unpaid carers.

We had some good news from SLaM’s involvement lead as they have a new inpatient Modern Matron, who I will be closely working with in the new year. There will also be a community carer’s lead for the borough, but again this might be something or the new year as a lot of carer issues are out in the community.

There is a plan for SLaM to set up a support group probably on the wards, which I feel would be great even though I am already setting up carer-led peer support groups in several boroughs. I really hope the development of the SLaM carer’s support group involves ideas from the Lewisham MH Carers forum.

This wraps up the brief update from November’s update of the Lewisham MH Carers forum.  I can see Lewisham Carers becoming more festive as I await any Xmas party from the Carers centre.

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The next Lewisham MH Carers forum will be in January for the new year.

We Coproduce forum update – November 2019

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.

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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.

You can find more about them off their site https://www.wecoproduce.com/

The forum

The WLC forum took place at St Andrews Church on a cold Tuesday morning, the forums run once a month to cover the boroughs of Hounslow, Ealing and Hammersmith.

These are the borough West London NHS Trust covers, although the Mental Health trust covers a lot more areas including the famous Broadmoor hospital.

You can find out more on the West London MH Trust from the link below.

https://www.westlondon.nhs.uk/

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Who Presented the forum for that day

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.

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Who Attended

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.

The Agenda

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.

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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.

https://www.ucc.ie/en/media/academic/nursing/2019images/newsimages19/newsdocuments/13and14november2019conferenceprogrammeoverview.pdf

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.

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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

  • Rationale

How NHS England felt that listening to people who use or care about the NHS can help understand people’s health needs better.

  • Research Questions

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?

  • Methodology

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.

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  • 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.”

Thank you for stopping by.