Monthly Archives: January 2020

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.