Tag Archives: NHS

My Carer wish list for 2024

Thanks for dropping by my latest blog post. It has been a while since I wrote anything due to being unwell over the Christmas season, it cannot be helped because during these periods there is always something going around. I even had my vaccinations so at least I was not too unwell.

I thought to write a short blog not only to express my wishes for the new year, but to inform and influence other carers what to look out for. When I mention ‘carers’ I am talking about those doing a role unpaid, they might have to provide care out of love, duty or necessity.

Carers are often close family members or even a friend or neighbour, but make no doubt about it a carer has to cope with the resources that are offered to them. On a worst case scenario, a carer would either need to seek out those resources or campaign for them. This should not be the way, but because health and social care can be complex, it is important carers work with the system to get the best support they can.

So below here is my wish list for 2024, which is not a complete list, but something that springs off the top of my head.

  • Healing from a difficult year

It has been a difficult and tough year for many out there. The cost of living, resources thin on the ground due to the impact of COVID, more cuts to services and the NHS struggling. It is so important that we take time to reflect what we have gone through and how far our own strength has carried us and how we support our loved ones. During the festive period of 2023, it is important to heal. We might use faith, our connection to the community or our peers. If we do not heal then how can we care for others?

  • The strength to carry on

I am a realist and it might be sad to say, but 2024 is not going to be any easier, it might be much of the same as 2023, but I know did down inside unpaid carers will use the strength to continue to care. It is such a tragedy when a carer has to walk away from their role, but it is understandable. We cannot allow carers to be pushed out of a role, so it is important carers are identified. The outcome is better not only for the carer, but the person they are caring for.

For carers, it is also important to be positive about our situation, a constant negative focus can be draining despite the harsh challenges carers face in health and social care. It is important carers take the step to be heard. If you are caring for someone, tell your story, fill in surveys, make a stand and make alliances. You need to be heard or be ignored, this takes strength to carry on.

  • My links and projects with partners to strengthen

I developed and accumalated many links with fellow peer carers across the community. Some have been champions of carer activism, others focus on the health and wellbeing benefits. Some carers want to learn and share their stories, this is excellent. We all come together to make a difference with NHS and private healthcare organisations. For what I learn, I wish to share with others. I will seek to develop a path for others to follow where they can learn and in turn help carers who might slip through the net. We can all learn from each other, but we need to be partners.

  • Celebrating our differences to build a fairer service

The UK is a diverse country, we all have differences, but as long as we seek to share our unique values then we all have something in common. We all want good healthcare, we all want mental wellbeing, but not all people get a fair deal. There are tools, guidelines and policies that help to include carers from different backgrounds. Carers UK have worked so hard to develop their “Supporting Black, Asian and minority ethnic carers” guidelines.

Carers UK Minority Ethnic Guidelines -> https://www.carersuk.org/media/3izluvum/cuk-black-asian-and-minority-ethnic-carers-good-practice-briefing.pdf

We also have a focus on ethnic mental health from NHS England’s Patient Carer Race Equality Framework (PCREF), which is aimed at organisations providing mental health care.

NHS England PCREF -> https://www.england.nhs.uk/long-read/patient-and-carer-race-equality-framework/

All these projects were done in co-production and it is important organisations include those who are from different backgrounds. For too long research data has proved minorities are not getting a fair deal as services and systems were not designed to support them. It is a matter for being honest and working with our communities.

  • Carers Hospital discharge toolkit to bloom

Although not heavily involved in the new NHS England toolkit, I have a platform in many accute hospitals. It would be very foolish not to champion the hard work many have done to increase carer recognition and identification at hospital level. With those platforms, I can build a network of carers who wish to be involved and help grow the toolkit.

In the past it was a struggle to include the family when someone was taken into hospital. The focus was often on the patient, maybe there was not time to engage with the unpaid carer, maybe carer awareness training was lacking or even worse there was not tracking of data regarding carers. With this excellent toolkit for hospitals, the struggle is removed. There is a pathway, a toolkit and a plan to follow. As with all things new, the challenge will not be easy, but I feel us carers can work as partners with the NHS hospitals and feel included and supported in our role.

  • Triangle of care to influence organisations

The Carer’s Trust ‘Triangle of Care’ framework has been around many years. The Triangle of Care has a focus on mental health carers. Its aim is to strengthen communication between patient, professional and carer. A lot of the focus is of course on families and carers, but with the policies and practicies flowing from the framework we can only hope influence more organisations to take up the challenge and engage with carers using their services. The outcome is better for everyone.

  • Championing Carers UK focus on carers

Carers UK takes up the voice of carers for the nation. Its not only guidelines, support, toolkits, surveys and practices from the charity. As a realist, I know full well that many unpaid carers would suffer if Carers UK did not work so hard to make the carer voice heard. I have been championing Carers UK for many years and will use all the resources I have to continue their view for a more caring society. This also includes other organisations that fight hard to include the carers voice be it Carers Trust, Age UK, Sane or others.

  • Write another book

Did you know that I am an author? I have written many books about the caring role as this is an excellent way to raise the awareness. Most of my books focus on the experiences of caring for someone with mental ill health, however I plan to write books on the importance of cancer carer voices.

I am thinking of perhaps 2 to 3 books to champion the importance of caring for others. A community that cares will care for itself.

  • More poetry

I dabbled in poetry for 2023 and have released a poetry book, several poetry videos and delivered performances. Poetry is an excellent medium for sharing experiences. A lot of my poetry can be dark as the carer experience can be an isolating role.

No one is trained to be an unpaid carer especially when a loved one is stricken with a devastating illness be it mental illness or cancer. Poetry does not have to be perfect, just a couple of lines can make a statement to be included in all time.

  • Continue to Grow the carer network

I am known for many things, but one of the greatest loves is developing a network. It is not complicated, all it takes is time. I have been running carer groups for many years. The carer groups used to run at local carer centres or hospitals, most are online due to advances in technology.

Be the use of books, poetry, podcasts, carer newsletters and forums, I will continue to use resources to bring carers together. I do not mind if one or two carers show up, the idea is we share and update. A carer network is vital for learning from each other and also holding to account. For carers to go into isolation is a difficult thing to do because risk being unidentified and will struggle.

  • Help form a platform with carers

When I head out, it is either to work, attend a carers event or spend time at a hospital, each time I am always thinking of ways to develop platforms. We all have strengths, ideas and gifts and we all can contribute as carer activists.

I know for sure that technology will change and so will ideas, so it is important to continue to develop platforms and work with peer carers.

  • Hope carers can hold local ICS and ICBs to account

The new NHS England Integrated Care System and Integrated Care Boards are developing processes and policies fast. The centralised scope of care at NHS England is changing towards a more local level. It is folly for unpaid carers not to step up and be included. Do not always expect ICBs to chase everyone as resources and roles will be limited. Carers UK and Carers Trust can only help so far, so there needs to be more carers who are diplomatic enough to hold to account.

By design the health and social care system focuses on the patient, in a sense they have to because the patient is the person who is at the most need. Still, as a human right we cannot expect the community to automatically learn the complex focus on health and social care. The community HAS to be included, the family, friend and carer have to be involved. There needs to be carer activism to hold to account. Carers who feel they can ignore these changes are in for a difficult time. It is better to be heard and lessen the isolation rather the give up, complain and be completely ignored, which is always a risk.

Time for carers to make a stand and work in partnership.

  • A caring community

Caring is not automatic, it takes time, skill and patience. There are those that view the caring role as lazy and not worth the time. This is a complete misunderstanding.

We do not know the time or place where we will care, but we will experience the declining health of our loved ones, if not the declining health of ourselves. To state caring is not important to society or the community is a curse. No one wants to be cursed with a community that does not value care, no one wants to be isolated and lonely with ill health. We might view ourselves as sufficient when we have the youth, power, intelligence at our command, but as time marches on we can see that we HAVE to rely on others.

It is foolish not to invest the focus on a caring community and sadly enough this can be an easy thing to do. It is so easy to be distracted by roles and duties, there is never enough time. We must prepare fast for the changing demographics of an aging society. We cannot always rely on the NHS as it is taking too much strain. One of the best way is for the community to share the ideals of care and service.

Caring for someone is not weak. A community that cares for others is strength, but we need to understand what brings us together.

How to save a life by Holding the Hope – Guest blog by Jo and Matthew

CONNECT REFLECT VALIDATE – 3 key takeaways to support someone in suicidal crisis

Jo Lambert

My name is Jo Lambert and I am one of six volunteers who made Hold the Hope, a suicide prevention film which explores how to support someone in suicidal crisis though a lived experience lens.

Over the last year, we have been working with film production company Creative Colony to bring our ideas and vision for Hold the Hope to life.

The film is split into two parts, with the first part told through two spoken word poems Today’s the Day and Hold the Hope (written by me and performed by award winning George the Poet). 

It depicts the journey of someone who is in mental health crisis and the thoughts, feelings and emotions they experience. The second part of the film features behind-the-scenes footage and interviews with me and my lived experience colleagues.

Hold the Hope was funded by NHS South West London’s Suicide Prevention Programme (part of the NHS South West London Integrated Care Board).

The film will form part of a new life-saving training course that will be co-delivered by me and other volunteers alongside NHS staff for schools and the British Transport Police in South West London.

At the start of the project, I wrote a carer narrative, a distillation of my lived experience supporting a loved one in suicidal crisis.  I condensed it into three key takeaway points – CONNECT REFLECT and VALIDATE in the hope that this might be easy to remember in a crisis situation.  These three words and their significance are themes which run through both of the poems in the first film’s voiceover and in the second film, my colleagues and I share our lived experience examples of how to connect, reflect and validate someone in crisis and what holding the hope for them means.  The film’s name derives from the name of the second poem.

As a mental health carer, I joined this project because I wanted to share what I wish I had known at the start of our family’s crisis.  I am delighted that there are plans not just to deliver Hold the Hope into the police and secondary schools, but that there are already discussions about sharing it more widely across communities – with mental health carers, parents, universities etc. 

Hold the Hope has been produced from lived experience, and my belief is that it is versatile and eminently portable because of that.  For me the beauty of Hold the Hope is that it can be shared anywhere – it is just as applicable in a corporate setting so that staff can learn how to support family members and colleagues as it is for clinicians in a hospital who can deepen their understanding of their patients’ experience.

“Can you turn stigma on its head

And see my staying power instead?”

From Hold the Hope ©Jo Lambert 2023

For me, this is the most important part of the poem.  Once you start to understand the details of the back story to someone’s suicidal crisis, what is remarkable is not that the person had thoughts of ending their life but that they coped with as much as they did, as well as they did and for so long.  The act of connecting, reflecting back and validating someone’s experience and holding the hope for them in their moment of crisis, can re-connect someone with their own immense internal power to survive.

It was an honour and a privilege to be part of this project and I have made what I hope will be lifelong friends as well as extended my own understanding from the shared experience of my colleagues.

Final words by Matthew McKenzie

I attended the Hold the Hope Launch on Friday the 8th of December 2023. The launch was at the Everyman Cinema Borough Yards.

I was not sure what to expect, but felt welcomed and involved. With collegues from Cygnet attending along with me, it was a great way to support the amazing work Jo Lambert and others had put into the project.

After watching the video Hold the Hope, I can certainly see the challenge that must be taken up by the police, rail service, schools and more. Suicide must be tackled as soon as possible and one of the best ways to do this is through education.

Health, social care and the mental health services can only grow stronger with the inclusion of those who have lived experience. It takes courage, determination and care for those who get involved, because they have their own challenges and trauma.

The film clearly shows the importance of holding on to hope. There is always a chance, but sometimes we cannot see this. Sometimes those who attempt suicide cannot see any hope and those who should help can lack the skills to spot and prevent suicides.

With Jo Lambert’s poem, I can see how this hits home. I can feel her words gently remind that there is hope.

I could not help but be intrigued after the film was shown. I wanted to hear so much from the inclusion of lived experience.

I asked Jo what she expected from the project and was amazed at how thoughtful her answer was. As a carer I can see the potential of the project. We need to include carers and help them tackle the challenges when caring for someone going Suicidal Ideation.

I admit there is so much to do, but with the Hold The Hope project, I can certainly see a strong foundation.

Thank you for reading

Why hospitals need to increase focus on unpaid carers

Here is my first carer blog post for November. Come to think of it, November is an exciting month because it is not long until Carers Rights Day which takes place on the 23rd of November. It is important unpaid carers know their rights, but that is a blog post for another day. What I want to highlight in this post is something I have been doing for the past year. That is having a location in some hospitals to engage with carers wandering around the area.

Why do I feel it is so important to engage with carers at hospitals? I mean I can always link up with carers at support groups or carer centres. Well from lived experience, I know full well that hospital experience for carers can be a daunting experience. With health care as it stands, the focus is often on the patient. It is how we understand that the patient is in need, especially if their health is in crisis. The patient becomes the service user and thus they are the core focus of hospital services.

The carer or family member might possibly be in the background. Patiently waiting for their loved ones recovery, they want to follow that person through the hospital experience. Yet, there are probalems and challenges. Very few health professionals often engage with the carer, they might fail to identify them, not keep the family, friend or carer updated. Worst of all there might be scenarios where the carer is completely ignored even if the carer is pointing out options for better recovery or warning against something. There could be lack of carer advocacy, lack of carer referrial, lack of carer peer support especially when a loved one is nearing end of life.

Some people do not even know they are caring, they just arrive in hospital and listen to every advice the health professional provides. People experiencing the role of providing unpaid care might just end up coping in their role.

If carers go through all of the above and believe me a lot of carers experience this when they wander the wards of hospitals. Then it is not hard to understand that carers can feel under valued. Carers will feel they are not listened to if policies and plans are not in place to hear carers out. If carers feel they are not heard, then they will not want to engage with professionals. It is not like we want to force people to take the label of carers, but if they are not identified then how can the hospital system provide carers with the support they need.

With changes in the Health and Care Act, it is vital that hospitals work hard to engage with families and carers. Many carers taking their loved ones to hospital still go unidentified as hospital record systems are too slow to record carers. There has been great strides in the NHS to use the power of co-production to develop a carer’s discharge toolkit. Many NHS hospital trusts have taken the challenge to improve the experience of carers at hospitals. This provides a pathway to understanding carer needs and compiling data to find out the root causes of carer distress.

For far too long carers feel they are not understood or are not provided any service even though carers ARE actually using hospital services. Just because carers do not have a hospital bed, does not mean they are not vital in continuing care especially when the patient is discharged. The NHS faces immense challenges and will rely on the caring community as never before.

With the new carers hospital discharge toolkit, there is an excellent foundation to build upon to make carers included in the hospital experience. The NHS owes this to carers and we need to include, support and value the experience unpaid carers bring.

Carers and hospital discharge toolkit – St George’s University Hospital

Here is another blog post from carer activist Matthew McKenzie. I recently just came from a steering group event from St George’s University. This took place on the 30th of October. The groups focus was on how the hospital trust can work towards identifying and supporting unpaid carers.

St Georges University Hospital

It might seem such a silly question, but I am sure someone out there is asking why should hospitals work towards identifying unpaid carers?

There simple question is unpaid carers are struggling. They struggle with caring for someone and will expect to struggle when their loved one is discharged from hospital. If the carer is not identified then all to often the carer will have a bad experience of hospital services, which will probably impact on the cared for.

This has to change and fortunately there is a new strategy to improve carers discharge using a toolkit called the “Carers and Hospital Discharge toolkit“

This initiative is from NHS England which was co-produced with carers and patients in mind.

Every so often I pay some attention to acute hospital trusts. I even have a carers stall at St George’s University hospital, just as I do at some other hospitals. I was delighted to be invited to the steering group to see how things are progressing with the hospital trust.

Implementing a carer initiative regarding patient discharge is no easy feat. St George’s university hospital is a massive trust with around 9000 staff. Part of the Epsom and St Helier group. St George’s serves a population of 1.3 million across southwest London possibily covering 8 London Boroughs.

So what were the updates from St Georges Carers Steering group?

Well with the group chaired by Wendy Doyle who is the NHS trust Head of Patient Experience.

There was the launch for Carers Week in June 2023, the NHS acute trust has done the following

  • Started to connect with colleagues and key collaborations including healthwatches, NHS staff and carer centres.
  • St Georges team have also Identified an Executive Sponsor
  • Plus they continue to raise awareness of the toolkit
  • They hosted the first steering group with the focus on when to run the group.
  • The group also looked to how they could implement the toolkit.
  • They looked at implementing toolkit as a QI project
  • The team also spent time with discharge team, Rise, Cerner leads, London care Record, and NHSE to explore date capture

What impressed me on what St Georges hospital trust were doing is tailoring their patient system “Cerner” with a method of recording carer information.

There also has been a lot of work on the new carer’s leaflet, which was co-design leaflet for staff to signposting to carers. Since I have a carers stall, the leaflets will be useful to help engage with carers.

There will be a lot of work to do, but I am impressed with how far the university hospital is making a difference for unpaid carers.

Community Design Leads – Royal Marsden Partners Cancer Alliance

Another post from carer activist Matthew McKenzie. This blog is aimed at those caring for someone with cancer for the South West of London.

Exciting news!

If you are interested in future south west London lay representative roles.

Community Design Leads will help Royal Marsden Partners cancer alliance design future south west London lay representative roles for various cancer meetings. 

They are looking for people who live in Richmond, Wandsworth, Merton, Kingston, Croydon and Sutton. 

You will need to be able to attend: 

  • Three 1.5 hour meetings – these will be online on Microsoft Teams on the following dates:
    • Thursday 14th September 1.45pm – 3.15pm, South West London Cancer Board
    • Thursday 12th October 3.30pm – 5pm, Clinical and Operational Board
    • Thursday 19th October 10.00-11.00am, Executive Board Meeting
  • Join a pre-meet for one hour before each meeting – to help you prepare
  • Join a follow up meeting for one hour after each meeting.

As a thank you for your time you will receive a £150 voucher.

Why they want to co-design these roles with you:

By working with local people to design these new lay member roles they can make sure they work well, that lay reps are supported, that they are able to contribute to the meetings effectively and make a difference.

You:

You don’t have to have had significant experience of using the NHS or being involved in formal board meetings to undertake this work.  This is important that carers are included to shape services.

This is a great opportunity to:

  • share your experiences of the meetings,
  • make a difference and help us improve how we hear from local people, acting as lay members,  in these meetings
  • help us understand what matters to people and our communities
  • enhance cancer related services for people across south west London. 

To find out more about the role please contact Kath Malhotra for further information:  07801216768

If you are interested in the role please download and complete the form below and send to rmpartners.admin@nhs.net

Deadlines for applications: 30th August

Informal interviews will take place virtually on Wednesday 6th September.

The challenge for unpaid carers and the NHS

Welcome to another blog from carer activist Matthew McKenzie. I raise awareness of unpaid carers and run monthly groups aimed at those caring for someone suffering mental illness. I also starting to run groups for those caring for someone with cancer. Did you know I am also an NHS Citizen?

Health is so important to us, especially when you are caring for the health and wellbeing of your loved one or the person you are caring for. If anything goes wrong when booking appoinments, operations or navigating the health system then the affect can be life changing. NHS has provided free healthcare for around 75 years and long may that continue, but as this blog will raise there is a big ask aimed at carers and those they care for.

  • NHS England a cherished organisation for the people.

NHS England was the envy of the world. A great idea put into practice. Free healthcare for all, if you can or cannot afford it. A step forward for a society that values its people. It all starts with people, because people and communities are important to the health service.

The NHS is still loved by people, but the challenges it faces will test the patience of many. With long queues and ever changing systems. The NHS is asking for people to help drive the health service through tough waters.

  • What the NHS has gone through

The NHS has to own up. There are things within its control that could have made life easier for carers and the ‘cared for’. There were some decisions that took too long. Some projects that cost too much, some plans that never evolved. The NHS unfortunately also struggled with things outside its control as with the pandemic, funding issues, under valued staff and complicated structures getting outside its control.

All the above has led people to feel forgotten. The users of the NHS are feeling distant because their health is on the line. As a carer I often worry if my ‘cared for’ health might worsen. I worry they would have to join the endless queue where there is a gamble for their own health.

Yet, I still love the NHS. It is hard to imagine that free healthcare will turn into healthcare for those who can afford it.

  • Its not enough to love the NHS

As the title says. It is not enough to love the NHS. We are at the crossroads. I as an NHS Citizen ask carers to continue ti focus on what the NHS is doing. This means Nationally and locally. Not only is the ‘cared for’ health at stake, but our own health as a carer. The carer’s health is at risk, the carer identity can be missing. With our own worries, wellbeing and the risk we may fall unwell ourselves. The question asked is “how can you care for someone else, if your health causes you to give up caring?”.

We now need to take our cause to the next level and question again how the NHS serves us. There will be drives and targets to drive down waiting times for the NHS. The government and the NHS have to act, because people should not be made to suffer this way. The health services needs our help. We need to feedback what we feel is working and also feedback does not work.

This might sound boring and exhausting, you might even think that as a carer, you have heard all this before.

Yet the NHS is for you. As a carer, you should be counted!! Without unpaid carers, the NHS will sink into the abyss and now the NHS is depending on informal carers to provide quality of unpaid care.

The NHS will work to help identify, support and work with carers. The NHS cannot do this without input.

  • Help drive it

The NHS is huge. I am not kidding. You know the NHS has grown to be a complicated structure, because the populations needs have become complicated. We are living longer, this is part of the NHS successes. However the complexities of the population comes at a cost. Loving your health service is not enough. Hold the NHS to account, question what providers are doing. If they do not engage with carers, then unpaid carers need to engage with the NHS.

As carers we have the right to help drive the NHS. The health service is ours, but not by right and certainly not by an ideal. We have to work for the health service to work for us.

I will not lie. The keyword is “work” and this will be hard work.

  • Feedback

The most simple way to get involved in shaping and driving the NHS is to feedback. Do not be silent and cope as a carer. Tell the health service what affects you. Let the NHS know that as a carer, you should be counted.

You should not be ignored, because you want to see the best support for your ‘loved one’. If you are supported to care, then in turn this supports the NHS.

  • What are your providers up to?

There will be new ideas, new projects and new ways of engagement. Most of all there will be new ways of providing a service. I do not have the answers, all I know is that waiting lists have to be driven down to acceptable levels. Too long people have suffered waiting for operations.

Too long carers have been missed out and expected to get on with it. What are your Integrated Care Boards up to? Where is that money being spent? As a carer, do you know something that could help the community of unpaid carers? Its about engagement and it is also about holding to account. We need to work together.

  • It starts with you because

It starts with you because you are a citizen. It starts with you because as a person it is your right to healthcare. It is also your right to healthcare for your ‘cared for’. As a carer, you have those ideas that can help the NHS.

You have seen how healthcare supports and treats you and the person you care for. We love the NHS and we only ask the NHS to care for us. However, It is not enough to love the NHS, it is now time to value the NHS. It is time to fight for it.

I cannot promise the outcome, things will change for the better and some things will be challenging. Still, as a carer activist, I ask carers to stand up and be counted.

It starts with you because you ARE worth it.

Realising the transformative potential of AHPs

Welcome back to another blog post by carer activist Matthew McKenzie. Quick question. Do you know about Allied Health Professions?

Well, allied Health professionals work to provide the community with the best support and health benefits using their skills and expertise.

Allied Health professionals work in many different settings and they do not always have to be based in hospitals. There are around 14 all doing their best to serve the community.

Art therapists
Dramatherapists
Music therapists
Podiatrists
Dietitians
Occupational therapists
Operating department practitioners
Orthoptists
Osteopaths
Paramedics
Physiotherapists
Prosthetists and orthotists
Radiographers
Speech and language therapists

Still, serving the community is not enough. It is about including the community and putting people first. This is done through co-production, leadership, innovation and bringing out the best in the AHP community. The health of the community is a challenge if the health of the environment suffers, so it is important to prepare for a greener future and cleaner future.

The Allied Health Professions have set their strategy for england, which you can view below.

Click to access allied-health-professions-strategy-for-england-ahps-deliver.pdf

There also is a new video to promote why AHPs should continuously improve their contribution to high-quality health and care services.

As a carer activist, I know full well that high quality care can have a positive impact. We all have a part to play, just as we all want healthier lives. Users of health services want their views taken into account and this can lead to a better strategy.

Thanks for reading.

Carers Week – NHS Toolkit launch at St Georges university hospital trust.

Welcome to a special carers week 2023 blog from Matthew McKenzie carer activist and author. As a carer’s activist, I often try raise awarness of unpaid carers. I even try to raise awareness at hospital NHS Trusts. One of the hospital NHS Trusts is based over in South West London. This hospital is St George’s University hospital.

Basically it is one of the country’s principal teaching hospitals, which is shared with St George’s, University of London, which trains medical students and carries out advanced medical research. The NHS trust has more than 9,000 staff and is one of the four major trauma centres for London.

I actually run a carers information stall at the hospital to remind staff and carers about the carer’s role.

It was great to hear that I was invited to the London discharge toolkit which is being rolled out across all NHS acute trusts in London. The toolkit was developed by Debbie Hustings involving many carer organisations and carers with co-production.

With my involvement in NHS England, I have a keen interest to see how the toolkit increases the focus on unpaid carers.

The toolkit serves many purposes, as in educating NHS staff, raising carers rights and examining challenges in the health system.

I have fedback my thoughts to NHS England regarding the toolkit and a few other things. Below is the link to the toolkit

https://carers.org/resources/all-resources/142-carers-and-hospital-discharge-toolkit-for-london-hospitals-and-community-providers

So on 8th of June I attended the Launch of the toolkit at St Georges university hospital

I was joined by NHS England carer lead for London as we spoke to NHS staff working so hard to make changes for unpaid carers.

We also spoke to carer centre representatives, carers and third party organisations. I picked up a number of leaflets for my carer’s stall, but also spoke to a few people about the information provided.

All in all, staff at St Georges were confident of rising to the challenge to engage and support unpaid carers.

April Carer Forum Updates 2023

Welcome back to a quick update of my carer groups and forums. I have resorted to doing a brief update due my current projects raising carer awareness. As of this moment, I am writting fiction carer stories. You can check out my YouTube channel to view those stories. I have around 13 more stories focusing on caring for someone with mental illness, I will then work on stories focusing on caring for someone with cancer and follow that up with a book.

Until then, here are my updates below.

Lewisham Mental Health carer forum

For my Lewisham MH carers forum we had engagement from Mina Hadi who have lived experience of mental health. She is the service user representative for the Patient Carer Race Equality Framework over at East London NHS Foundation Trust.

Mina would have attended my ethnic carer forum, but there was a clash, so we agreed she can present at my Lewisham carer forum. I often say to members of my carer group to network. This is vitally important if carer members are involved in a community project. This is why I try to link up with other groups involved in increasing equity for ethnic minorities using mental health services.

Mina talked about the importance of PCREF and how East London NHS FT is working towards reaching out to marginalised groups. These being diverse ethnic groups, refugees, asylum seekers, the homeless and the LGBTQ community. All are vulnerable to mental illness due to discrimination, stigma and lack of support. Mina talked about what needs to be done and work in progress.

The next speaker was Dr Georgina Charlesworth from University College London.

She is the Associate Professor in Research Department of Clinical, Educational and Health Psychology.

Her main focus is on dementia where she has wrote a number of papers. Some are shown below

  • Living alone and risk of dementia: A systematic review and meta-analysis
  • Befriending carers of people with dementia: randomised controlled trial
  • Peer support and reminiscence therapy for people with dementia and their family carers: a factorial pragmatic randomised trial.
  • Examining the Lancet Commission risk factors for dementia using Mendelian randomisation

Dr Georgina was joined by another researcher linked to North East London NHS Foundation Trust. Dr Georgina spoke heavily on the importance of dementia carers. She was impressed that such a carer forum existed and felt that we as a group set an example. Dr Georgina spoke about the problems of stigma and she talked about one of her projects, which was the Carer Supporter Programme within Prof Martin Orrell’s NIHR-funded programme entitled “Support at Home: Interventions to Enhance Life in Dementia”.

The new Alzheimer’s Society service manager for South East London was also due to join us, but were unavailable and I am hoping they will be free next time.

Ethnic mental Health carer forum

This is a forum not bound to a specific area. There should be places for minority ethnic carers to attend, so I often advertise the group to other NHS mental health trusts. The main group members are usually from South London.

The first speaker for this carer group was Abigail Babatunde from Kings College London. She spoke on updates for the project advanced directives black people.

The Advance Statements Project is a research project on getting advance statements – also known as advance choice documents or advance directives – to work for Black African and Caribbean service users who have previously been detained under the Mental Health Act, their carers, and mental health staff.

The goal of the research is to:

  • Help reduce detention under the Mental Health Act for Black service users,
    Support, hear and understand Black service users and their carers/supporters,
  • Know and further understand the issues surrounding using advance choice documents and why staff members may not follow them,
  • Reduce coercive care in mental health care, and to better the relationships between Black service users, their carers/supporters and staff/professionals.

There is a follow up event at the Ortus (Maudsley NHS) below.

The next speaker was Denise Mantell from Bromley council. Bromley Council is currently developing its Carers Strategy and would like to hear from as many carers as possible. Since Oxleas mental health services covers Bromley, it was a chance carers could get to be involved. It would help if the carers strategy involve those caring for someone with mental illness.

Talking about Oxleas NHS Foundation trust, we were joined by Japleen Kaur and Marie-france mutti. They spoke about the new Funding scheme – Improving patient and carer experience grants.

If those within Oxleas have an idea that will improve patient or carer experience, they can bid for funding (up to £750) from our charitable funds. The project ideas need to be developed jointly between members of staff and people who use Oxleas services or care for people who use Oxleas services.

Stages

  1. Application form completed and sent to our Involved Network
  2. Applicant informed of bid outcome
  3. Transfer of funding arranged
  4. Activity takes place
  5. Bidder shares photos/feedback on how funds have been used.

Scheme criteria

• The grant should be spent on enhancing the experience of people using our services and their families
• It should be used for activities/items that are not funded by trust services.
• It should benefit at least three service users.
• All bids need to developed joined with people using our services and staff members.

The first application period for the Improve Fund is open now until 31 May 2023.

If you have a query about the fund, please email: oxl-tr.involved@nhs.net.

Joint Southwark and Lambeth Mental Health Carers forum

Here are the update’s for my other carer forum I run in the afternoon for the last friday of the month. I used to run these forums seperately, but due to covering a lot. I have decided to merge them.

We were delighted to be joined by another speaker from University College London. This was Dr Rebecca Lacey who talked about her study on Young Adult carers in the UK.

This was following off from Carers Trust “Young Carers Action Day”, but unfortunately it was too late for Dr Lacey to attend in March.

Staff from Lambeth Carers Hub attended to hear more on her research.

You can read Dr Lacey’s paper on the link below.

https://www.mdpi.com/1660-4601/19/21/14076

The next speaker was Sarah Allen who is the Head of Patient Experience at Guys & St Thomas NHS FT. The hospital trust is currently working on their Carers Strategy. I often to say to all carers that it is very important to engage with hospital service carers strategy.

It is not enough for a carers strategy to exist, but to be used to hold services to account as in “You Say We did” focus.

GSTT want to involve families and carers in all aspects of their services.

They aim to recognise, value, include and respect carers. Plus treat them as expert partners at the heart of decision making for the person they care for.

I also presented the new NHS England hospital discharge toolkit to the group, there was a bit of confusion as some felt the toolkit was for triangle of care.

https://www.england.nhs.uk/london/our-work/carers-and-hospital-discharge/

In the end I pointed that this was for acute hospital services in London.

I am also pushing to engage with GSTT Cancer and Surgery Clinical Group to raise the profile of cancer carers. Once I have built a group of cancer carers, I am hoping for engagement for that hospital trust especially regarding the cancer group. I am also getting support from Kings NHS and eventually will expand to other hospital trusts.

South West London MH carers group

This group is a hybrid as there is a carer-led peer focus for the first part of the group. The next part is finding out about services and how they are supporting carers.

The group is strictly carer-led and co-facilitated by SW London carer Ava. She does the peer group section, while I will focus on speakers and engagement.

We had a great turnout as all 5 carer centre’s help promote the group, but we can out of time for the peer support section. The group seeks engagement from the local mental health trust South West London & St George, but this can be difficult, probably lack of staff maybe? Still we got engagement from Kingston Hospital who have a strong carer focus.

We where joined by Beth Mburu who is one of the Clinical Liaison Practitioners. Kingston Hospital is working on their carers focus and Beth talked about the following

  • Hosp. Discharge Planning Toolkit (aimed at staff)
  • Carers’ Needs Assessment Template (augmenting and embedding the Carers’ Agreement)
  • Carers’ Passport
  • Triangle of Care – hospital self-assessment tool and lessons learned/embedded
  • Resource for first time Carers / people who give their time to support a vulnerable person
  • National resources -already in existence from Carers’ UK – communicate and disseminate to the right people
  • Live/real-time digital tool aimed at Carers’ drawing together local provision and resources
  • Safe Transitions of Care – checklist for front-line staff
  • Hospital checklist / advice and Information

Kingston hospital NHS FT also had a carers event on the 4th of May to engage with carers and let them know about the work they are doing to support carers.

Again I am also focusing on engagement from the hospital’s cancer services to prepare for my cancer carer group. It is important to know who does what and how they focus on cancer carers.

Involving carers in co-production

Welcome to another carer blog by Matthew McKenzie. You might already know, I am an author raising awareness of unpaid carers. One of the books I wrote touches on the subject of co-production. The book I wrote titled “Experiencing mental health caregiving – unpaid carers” had several chapters regarding co-production.

However, why have unpaid carers be involved in designing health and social care services? Lets first look at the problems and challenges.

The problems

Health and social care sometimes do not meet eye to eye with unpaid carers, there are a lot of assumptions made about carers, there are also a lot of biases on the needs of unpaid carers. We can certainly champion the good works of health and social care, but to be realistic there are plenty of problems as well.

  • One shoe fits all policy, different carers have different needs
  • patient centred to the point of ignoring the carer
  • Limited resources means carers just cope
  • Co-production on a complex service might put people off being involved in design
  • The leader in co-production might still have “I know what is best” attitude, this can also put people of being involved.
  • History of bad results damages reputation, so carers feel they have heard it all before.

These are some of the challenges and problems health & social care services will have if they want carers to be involved in co-production.

Some solutions

So we have just touched on the bad news regarding co-production, but there is also good news, there are some solutions that are floating around.

We just cannot rule out co-production even though it has been around a long time. In fact co-production has been around so long, that it might have been watered down. The word “co-produce” can be almost a throw away term to get people excited.

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There might be a lot of asumptions made about the uses of co-production. If we want coproduced and co-promoted services, we have to put those involved first. Those services will have to be flexible enough to offer solutions tailored to individual carers. It is not an easy task since those services need to recognise carers as a protected characteristic. Carers are vulnerable and they do need guidence, support and care for themselves. If carers are not valued, then they will struggle in their role providing unpaid care.

Co-production should raise the voices of those involved. This means we avoid the “One shoe fits all policy”. It means better service delivery that benefits as many as possible.

What next?

Those involved in inclusive service design need to be skilled, they also need to know there are issues within those services and those carers need to be confident in challenging those issues. This is not easy as health & social care are very complex entities. We have organisations like Healthwatch monitoring and collecting feedback from health services. Some things concerning the running of health & social care services are complex by design. So to expect carers to challenge those services is a tall ask.

Even before including carers in designing a fair health and social care service, carers need to knock on the door to request co-production. To make matters more difficult, not everything is actually co-production, due to time restraints on service delivery, co-production activities may be rushed or brushed aside towards tokenism. It is a big problem, but to be realistic sometimes it cannot always be avoided.

Earlier on in this blog I have mentioned time as a cost, carers can usually use their own expert of experience to express their needs, but transmitting that experience into services will mean carers will have to be trained to champion co-production.

Conclusions and findings

From my 2nd book “Experiencing mental health caregiving – unpaid carers”

I wrote upon the subject of inclusiveness within several chapters, one of them was Chapter 6 – Co-production and involvement.

I asked several questions, this question asked “What do you think co-production means to unpaid carers?”

With the answers provided from unpaid carers, activists and researchers one response was interesting regarding co-production.

“Co-production means that a carer is involved in service improvements, support groups and forums, because their lived experiences can be more valuable than the academic research. Co-production can help a carer to interact with other people in a similar situation to them. The carer can feel valued when their contributions have been used wisely. – Annette Davis – Carer and carer peer activist”

As mentioned earlier there are important keywords e.g. lived experiences, groups and forums, feeling valued and contributions.

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For Chapter 30 – Co-producing in health and social care. I touched again on services. I was interested in the challenges as mentioned earlier in this blog

The question asked “What are the challenges of co-production?”

A carer responded with the following.

“Money, I think the challenge is it can cost so much money, you can’t just sort of say to a professional to just go ahead and co-produce things. You’ve got to fit this round everything else and go to a meeting, because you see, these professional meetings are beginning to end. They go through an agenda and with Co-production, you can’t really do that. Not at the early stages. If you are actually coproducing, then you actually have to sit down and think of ways of facilitating and carefully plan coproducing. This requires time and unfortunately time is expensive in terms of the professional’s time. If you want it, you have to pay for it. The people e.g. patients/carers who are co-producing should be paid as well. So we have got a commitment. However, from the professional side, you’ve got to pay for their time as well. Its expensive. – (Ann – Unpaid carer)”

What can we take away from her response?

Inclusive service design will need some form of co-production, but will definately need resources. It is not always about money, it is about time and commitment. Things have to be planned carefully, interest must be kept up for those involved. Co-production can also be expensive, but if done right it does not have to be so costly, but it certainly should value those involved.