Author Archives: mmckenz11

About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

Young carers awareness day 2020

106542Thanks for stopping by. This is a blog post based on raising more awareness for many young carers around the country. This is that at the time of posting this blog post, it is young carers awareness day. Now I am not a young carer myself, but I did provide care and support to my brothers when I was much younger. They both have autism and every so often I still provide support for my brothers, because being in someones life should be a family commitment.

Young carers awareness day

So whats it all about then? Why the need for young carers awareness day? I mean, aren’t young people not given that support already from somewhere? Is it someone else’s responsibility? Well I will come on to that in a moment, but for now I want to put a spot light on young carers who do their best to care for someone. The main reason I am throwing my chips in on this is that its not common for young carers to write, blog, speak and raise that awareness themselves. Heck! many young carers do not even know they are young carers so they often miss out on support.

Young carers awareness day runs every year and is driven by a national charity called ‘Carers Trust’. Taken from Carers Trust’s website ” For many, their caring journey begins at a much younger age. Caring for someone can be very isolating, worrying and stressful. For young carers, this can negatively impact on their experiences and outcomes in education, having a lasting effect on their life chances.”

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I touched briefly on the importance of raising awareness for young carers day, but there is much more to it than just raising awareness. Young people even if not caring still struggle in getting support for many things, this is doubled or tripled for young carers who can unfortunately fall through the system. I hope that those in authority take note of young carers awareness day and help make its aim come to life.

Still, we can only learn so much from the idea of young carers awareness, I think a small story can show so much more to the situation young carers face up and down this country.

A small story

Let me tell you a small story, this story is not based on any living person, but the experiences are very real and they are very hard. I would like to warn you this story pulls no punches, but to get the message across, we sometimes have to point out the painful stories.

My story starts with a young boy, so full of energy, wonder and excitement. His life ahead of him as he notices from his friends at school. His name is Sam. A simple young boy and he was well raised by his mother, she cared for him and she loved him. There was never any issue of the close bonds in the family. His mother had recently divorced from her husband, but she fought on and raised their only son.

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It was as if only yesterday, Sam’s mind wandered back to this unfortunately incident. Sam remember he was just around 8 years old, when he came home from school. He suddenly noticed when he got in, the house was so dark, like all the lights were off. Sam called out to his mother, but no reply came from her. Sam remembered that he walked into the kitchen to get something to eat. The family was struggling as many families low in the income gap tend struggle. Sam was just reaching for a plate out of the cupboard and he spotted his mother sitting on the kitchen floor. Sam asked if she was ok, but after a while she responded, but not directly looking at Sam at all. She slowly replied that she was ok.

Sam did not know what else to say, but he then took his mother by the hand and led her to the living room and turned on the TV. His mother slowly sat down on the sofa and then looked at her young son. Her precious only child. Her eyes seem almost empty of life, but she spoke to Sam, she stroked his hair softly and said that she loved him. Sam’s mother watched the TV and sat there for hours. Sam remembered this so well, he was so confused he never saw his mother act like this before. What was wrong? What could he do?

The next day after Sam came from school, everything seemed different. His mother was well again as if nothing happened the day before. She seemed energetic, and she even asked Sam about his day at school. Sam seemed much happier that his mother was more responsive. However when parent evening came about at the local school, Sam’s mother acted rather strangely when speaking to teachers about her son’s progress at school. Sam was with his mother, but Sam’s mother was struggling to concentrate on what the teachers were saying. Sam panicked, because his school friends were watching. Sam could hear the whispers from his friends. “Sam’s mother is a wierdo! Whats wrong with her”?

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The next day at school, Sam could not be bothered to go in. He was too scared, too ashamed what people might say. Why was his mother acting this way? He played truant and just spent time siting in the park, wondering why his life was giving him such a hard time. He just could not understand, but if there was anything to come out of this. He loved his mother dearly.

The next day Sam’s mother was so unwell, she was asking Sam to do more and more around the house. Sam’s mother seemed to lack energy, she just could not do anything for herself. Sam did the best that he could. Yes, for certain days, Sam’s mother was ok, but things seem to be getting worse. Sam’s mother just sat there, as if not to care. She could not often dress herself, wash and instead Sam slowly took over. He asked his mother if she needed help and he started to cook, shop and clean. All this began taking its toil as Sam’s school work began to suffer.

The school was sending reports to Sam’s mother and soon a phone call came, Sam remembered this as if it was yesterday. He remember how his mother was pleading and saying that she is ok and that there was no problem. Sam wondered why his mother was upset and who she was speaking to over the phone.

Eventually days turned into weeks, weeks to months and then to years. Sam got older, from aged 9…10 and 11. Sam never gave up, he got older, tougher, wiser and even then after all the bullying, insults, stigma and tireless work. He continue supporting his mother. When someone at school asked if he was a carer, Sam did not know what this meant. He just loved his mother, thats all what he wanted.

Sam is now 22 years old. He is sitting in the street watching the people go by, oblivious to Sam’s plight. Sam does not hear much from his mother anymore. His mother has changed and it seemed she has succumbed to something. Sam’s mother can hardly speak much and when she does, its like a mumble, it does not make sense. A cold tear drops from Sam’s face, he wonders what he has missed out on in his life.

“God damn this world!” Sam thinks, as he sits on the floor struggling with his on mental health. “My mother, my life….whats next?”

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Sam begins to finally know what a young carer is….unfortunately for Sam it has come to late and perhaps he is just another statistic among many young carers.

What can we learn from this story?

I hope you found my small story eye opening. I know the story was not meant to be easy, but I know somewhere out there, there are many Sam’s who feel bitter about their situation. What can we learn from this story? We can learn quite a few things.

  • Sam had to grow up very quickly.
  • Sam’s mother certainly had mental illness, but no one knew the diagnoses
  • Sam took on the role of caring for his mother, even when he was not sure how to care for himself.
  • Sam’s own roles and duties suffered, especially his education
  • Sam lost many of his friends, as children they could not understand Sam’s plight….it was all a game.
  • What ever affected the family, eventually affected Sam’s future. Sam felt bitter about things as he feel into the grey area of carer support through his late teens.
  • Sam’s mother was terrified of social services. She felt they would take Sam away from her, Sam’s mother just needed that extra support, but many social workers had been moved on. There was now a lack of them, since heavy and sustained cuts removed important support for Sam’s family.
  • The health service seemed missing from this story, health support not only for Sam’s mother, but for Sam himself as depression, stress and anxiety slowly crept into Sams experience.  Sam did not feel empowered about his experiences.

So then. What next? Who is picking up the pieces? We are, but we have Carers Trust. A national charity fighting so hard to speak for young carers and engaging with young carers to speak for themselves. If nothing is done, young carers pay that heavy price. Young carers lose out on what many young children and young people take for granted. Young carers lose their enjoyment in life, they cannot be children anymore and have no time to play, have fun and feel part of the community.

I have noticed many carer centre’s run young carer groups and I see how happy young carers feel connected to other young carers at these groups. Still, Carers Trust is a charity as many of the carer centres are charities. We spend a lot of time banging that drum for awareness, funding and activism. Carers Trust need more to help with awareness and help with young carers.

A small warning.

I am not sure if there was a theme for young carers awareness day, I am sure there is, but I have just come back from an exciting Triangle of Care working group over at West London MH trust. I am writing this so quickly I hope there are not too many typos and I hope my blog post makes sense.

There is just one thing I would like to say. This blog post is just a warning. We must act now to protect the next generation as social care has a mountain to climb. Whoever is reading my post and is in a position to make a change, however small. We must reduce the situation faced by many young carers across the country. So that we do not have to see more stories of Sam and how his life turned out.

God bless you all and good luck on your carers journey, however young you are.

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.

Latest edition of my MH Newspaper

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Hello all,

There are no Carer forums for December, but in the meantime I am working on the posters for my new carer peer support groups and also working on my Carer audio series.

 

For more information on my Therapeutic Carer Audio series, please check the link below.

Carer audio series

Please also check out the lastest edition of my Mental Health Newspaper.

 

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.