Welcome fellow carers. My name is Matthew Mckenzie and I campaign regarding unpaid carers. Most of my time I focus on those caring for someone with mental illness. However this blog is a little different, well ok a lot more different. Before I continue, feel free to watch the video version of my awareness blog
I am still focusing on unpaid carers, but more on those who care for someone with cancer. Why is that you ask? Well I run a carer’s stall at some hospitals. Those visiting someone using those hospitals drop by that stall and I often get those who care for someone with cancer. Yes, a lot do visit requesting information or just wanting to be heard.
Did you know that April is Bowel Cancer Awareness Month?
Unfortunately Someone dies of bowel cancer every 30 minutes in the UK. So raising awareness of Bowel cancer is incredibly important.
Bowel cancer awareness month is an opportunity to highlight the symptoms of bowel cancer and encourage people to get tested.
In fact this type of cancer is one of the most common cancers in the UK. It is the UK’s second biggest killer from cancers and most likely to be diagnosed in people over 60.
Some of the common symptoms of bowel cancer include:
Bleeding from the bottom and blood in poo
Being easily fatigued with no obvious reason or cause
Pain or a lump in the tummy
Persistent and unexplained change in bowel habit
Sudden and unexplained weight loss
With these symptoms it is so important to get screened or tested for bowl cancer. This is especially important for those from ethnic groups. There is no shame being tested or talking about it.
If you are caring for someone with cancer, it can be understandable that talking about this can be difficult. Carers of those with cancer are suddenly thrown into a world of advocating, feeling guilt and stressed at what the future holds. It is important health professionals identify and listen to these types of carers.
How can we reduce the onset of Bowl cancer?
Eat less red meat and avoid processed meat
Eat more wholegrains, pulses, vegetables and fruit
Be a healthy body weight
Be more physically active
Drink less alcohol
Stop smoking.
I hope this blog has raised much needed awareness. I certainly will be covering more on those who care for someone with cancer to continue raising awareness.
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.
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.
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.
Welcome back to another blog by carer activist Matthew McKenzie. I often blog about raising awareness for those caring for someone with mental illness. If I am not raising awareness, then I am more likely speaking at events or conferences.
I am helping to promote a carer’s network with Cygnet Healthcare who are taking on the challenge of applying Triangle of Care into their services. So far I have opened several carer events at some of the Cynet hospitals around the country along with other speakers who are invested in raising the profile of unpaid carers.
For this event, I attended Cygnet Hospital over in Maidstone for another regional carer event. This was an opportunity to engage with carers from the area of Kent, especially since I am involved with Kent and Medway NHS Partnership Trust. So I was keen to travel to Maidstone and talk to carers.
We had a packed room of carers and professionals interested to hear talks about the importance of supporting carers.
There were certain things I was looking for at the hospital, especially the effort staff had put into promoting the carer event. I noticed lots of leaflets introducing what Cygnet can do for unpaid carers. Other information was on Cygnet’s carers strategy, carers passport and a chance for people to feedback about services.
I even managed to view the carer’s board.
We had some excellent speakers at the event. Plus it was great to see David Wilmott who is Cgynet’s Director of Nursing open the event. We also had a powerful talk from Lesley Mellor who told her story as a carer and the importance of carer empowerment.
Other speakers were Stephen Firn OBE who is Cygnet’s CEO for Healthcare division. Stephen spoke about his mission to make sure cygnet hospitals have a high focus of carer awareness. During my talk, I reminded attendees that when senior staff attend such events, it shows how the organisation values unpaid carers.
For my talk, I read poem number 28 on the importance of a carer’s network. Often carers do their role in isolation and behind closed doors.
The nature of the illness makes it difficult for mental health carers to connect due to stigma of caring,, being unsure of their role and also the stigma of mental illness.
I asked both professionals and carers their thoughts on the importance of providing care and the importance of connecting to a network.
I was proud that the healthcare professionals were knowledgable about the importance of including carers when providing services. This is done within the spirit of the Triangle of care.
We also had talks and presentations from Dr Erica De Lange who is Cygnet’s Regional director of Psychology. Plus Caroline Harris-Birtles who is Head of Nurse Education at Cygnet Healthcare. She educated carers about the importance of the nursing profession and how nurses can help unpaid carers.
Lastly we had a talk from Jennifer Vincent who works at Involve Kent. Jennifer is the team Lead in the Community for Carers. Involve is an organisation that focuses on Healthy, connected people and communities. Jennifer talked about how Involve empowers and support Carers, enabling them to care well for others and improve their own health and wellbeing.
I again have to thank Laura Sheridan who looked after both Lesley, myself and attendees at the carer event. I look forward to more events in future.
Bromley Carers Strategy Survey 2023 – Bromley Council is developing its Carers Strategy and want the views and experiences of unpaid carers to inform the content of the strategy.
Cost of cancer is damaging mental health – A new survey has found that 83% of people with cancer say unexpected expenses since their cancer diagnosis are impacting their mental health.
Welcome to my March update of most of my carer forums. These forums are for those caring for someone with mental illness. The idea of the groups is to allow unpaid carers a chance to find out about mental health services. The forums also allow researchers from universities and hospitals to update carers on current trends affecting carers and mental illness.
Lewisham Mental Health carers forum
For this carers forum we were delighted to have Bobby Pratap from South London and Maudsley NHS attend. Bobby is the Director of Implementation for the borough of Lewisham. This means in laymen’s terms that a large investment I guessing around 100 million will be focused on changes to mental health services in the borough.
With that kind of investment, it is vital for patient, carer and public engagement. Bobby comes with a wealth of experience straight from NHS England’s as the Deputy head of Mental health.
Bobby presented the challenges that mental health services face in the borough of Lewisham. He also presented some feedback from engagement events under South London & Maudsley. Bobby was certainly tested by the members of the forum who grilled him on NHS trust resources.
I also presented the new NHS London Hospital discharge toolkit. Since the Carers UK 2021 report, it has been widely known that unpaid carers feel uninvolved in hospital discharge. Carers complain that they are invisible to the NHS. So NHS London carer leads have come up with a hospital discharge checklist
The benefits to involving carers in hospital discharge are
Some Benefits
Reduced carer strain and breakdown Patients less likely to re-admitted. Caring situation is more sustainable Better health outcomes for both patient and carer Reduced overall cost to system
With some Accute hospitals taking the lead, there is hope other hospital will become carer friendly and see unpaid carers as part of the team.
The resource can be downloaded from below via Carers Trust Website
This forum is facilitated by myself and Ava who is a mental health and carer campaigner. The forum covers the boroughs of Kingston, Merton, Wandsworth, Richmond and Sutton. As a group focusing on mental health carers, we get support from the carer centres and from local Mind and Rethink organisations.
There was no speakers for the group this month, so I presented the hospital discharge carer toolkit. I also covered updates regarding the Triangle of Care.
Joint Southwark & Lambeth MH carers forum
For this group. Carers had a chance to find out what a Mental Health Solicitor does. We were joined by Burke Niazi Solicitors. The solicitor who represented my late mother had engaged with our group to answer queries, issues and questions. The forum was well attended and even some had attended from my other forums.
We were also joined by Lee Roach who is Lambeth’s carers lead for Maudsley adult services. Lee is also the Head Occupational Therapist for Lambeth Operational Directorate. Lee updated carers from Lambeth on services related to triangle of care. I was also interested in how Southwark carer leads were engaging with carers. It might take a while for them to drop by our group since Guys & St Thomas NHS are due to attend next month to speak about their carer’s strategy.
Lastly the group was joined by Guy Swindle who is the Deputy Director of Lambeth Living Well Network Alliance.
Greenwich Mental Health Carers forum
I only run this group Bi-monthly and Greenwich carers heavily supports the group. We get great support from Oxleas NHS and the Royal Borough of Greenwich often attends when they can. For this group we had engagement from Lisa Moylan who is Oxleas head of Mental Health Legislation.
The main reason I asked for Lisa to engage with the forum is to allow carers to understand what the department does, but also get an idea of how the Law department will deal with the new changes to the Mental Health Act. The MP will also chat with carers about their thoughts about proposed bill.
At the group, I updated members on updates regarding Greenwich Carers Strategy.
Some of the updates were
Raising awareness of caring with local employers Developing a carers self-assessment app Research with carers from ethnic communities Further development of the Mobilise digital platform Exploring feasibility of a Carers Card
There are plans Greenwich carers partnership board to Engage with local GPs and Engage with hospitals. Talking about hospitals, I also presented the London hospital carers discharge toolkit.
Ethnic Mental Health carers forum
This is the only forum that I run that focuses on carers from ethnic communities. It is also a forum that can actually reach out via several mental health trusts as sometimes we get attendees from SWLSTG, West London Health trust, Kent & Medway and CNWL, but the main focus is what South London & Maudsley or Oxleas are focusing on. The group also engages with speakers from universities and researchers. We also can get updates from the local authority or Healthwatch.
The speaker for March was Natalie Creay who is Founder of Liberating Knowledge, she is also on the advisory board of The Lancet Psychiatry magazine and a trustee of The London Community Foundation.
Yes, she does a lot. Natalie spoke to us regarding health inequalities of Black and Asian people. Her research looked at Closing gaps in patient data for Black and South Asian communities.
Through the focus groups and interviews they conducted with healthcare staff. It was found that
Staff were less confident about describing why data is collected or how it is used
Staff felt that a lack of people in leadership roles who are committed to tackling bullying, institutional racism and health inequalities
Some staff also referred to a concern from Black and South Asian communities about whether they can trust the NHS given past harms
There were innovative ideas proposed such as the NHS being more radical in how it thinks about data ownership and giving more control to people and their communities over their data and the insights generated from them.
It was found that The burden of tackling health inequalities rests on people with lived experience.
There were several recommendations regarding the research, some listed below.
Create the conditions for systemic change to enable the following recommendations to be delivered by accelerating efforts to eradicate racism within the NHS. This should include developing the cultural and racial capability of the workforce.
Consider developing a race equity framework for physical health services that draws on the approach used for the Patient and Carer Race Equality Framework in Mental Health services.
Secure the support and commitment of senior leaders to improve data practices, embed inequalities work and create space for staff to innovate within the NHS.
Actively challenge ‘hard to reach’ narratives that encourage the perception Black, Asian and minoritised communities are disengaged or unwilling to share their patient data.
Equip healthcare workers with the tools to hold meaningful conversations about data: explore more innovative approaches that provide engaging ‘bite-size’ learning material targeted at healthcare workers.
This led on to one of our members Brenda who is a member of the Patient Carer Race Equality Framework to report back how Maudsley is using the framework to increase health equality and reduce racism. We also got updates from the Public Health Training and Development Manager for Lewisham who have been working hard to reduce health inequalities within ethnic communities. This was emulated on projects from Bromley, Lewisham and Greenwich Mind Updates.
Welcome back to another blog post by carer activist, author and poet Matthew McKenzie. I just thought to do a quick blog about an exciting and important event I attended last night.
Carers Trust a national charity to promotes and supports unpaid carers have reached an important milestone. It was their 50th Anniversary and to celebrate that milestone, the charity held their event over at the Old Bailey.
I have never been to such a pretigous building before and I am still wondering how on earth Carers Trust managed to hold their event there. The event was a drinks reception along with important speeches as to why Carers Trust fights so hard for carers. Do you remember the TV soap drama Crossroads? If you do, then you might remember a particular 1973 Crossroads theme regarding someone caring after a car crash. This led to viewers sending mail about their thoughts and experiences, which in turn led to a national drive on support for unpaid carers.
You can watch a short video below showing the history of Carers Trust
The beginnings of Carers Trust was explained in detail by Angela Rippon CBE who was a guest at the drinks reception. Her lived experience, knowledge and drive to battle for unpaid carers was an inspiration.
The event was hosted by Sheriff Alastair King who opened the event. We also had speeches from chair of Carers Trust John McLean OBE and CEO of Carers Trust Kirsty McHugh. I admit I have never met Kirsty before, but she has lots of energy and dashes around very fast.
At the event I was introduced to those who also championed the role of unpaid carers. Rohati Chapman Exec Director at Carers trust was an excellent host and made me feel welcomed.
The speech by young carer, Aditya Akella was exceptional as he mentioned the themes that are important to young carers. A lot of the themes I often present regarding talks I do about my books. The most important is carers do their role out of Love including other things.
As I wandered around the drink’s reception, I could not help be taken in by the hall. The old Bailey is majestic and historical. The importance of justice, fighting for others and of motto’s etched on the walls require some serious investigation. There is a lot about the place I still do not understand, but reflecting back, the building holds a significant reason as to why people fight so hard for what is important to the community. I am not a barrister, Laywer or Judge, I am just a simple carer activist, but deep down I feel the Old Bailey actually wanted the event to be held there. This goes double to those who take the time to fight for the vulnerable.
I am aware that as a majority we still strive to do what is right, but because some roles are done for free, there are people who feel there is not much value in such roles. A just and civil society should try to value those sacrifices, because in the end it is what sustains the community.
All in all, I enjoyed the drinks reception and I wish Carers Trust success in the future.
Welcome back to another blog post by carer activist and author Matthew McKenzie. Only a few days until Young Carers Action day 2023, which will be on wednesday 15 of March. Young Carers Action day is an annual awareness and campaign event run by national carer’s charity Carers Trust.
If you are not sure what young carers do. They look after someone in the family unpaid and will have to cook, provide housework and even do shopping. It is not those tasks alone, young carers from the age of 5 can even provide physical care or emotional support. Young carers might even have to advocate for the person they care for or even help communicate for the ‘cared for’.
If you wish, you can check out my video on Young Carers Action day from my YouTube site below.
With all the tasks mentioned above and more, it makes sense that the theme for YCAD is “Make time for young carers”. It is important young people get the time for themselves since their role can be very demanding and caring for someone often comes with sacrifices. Later in life, people might have a choice in the care they provide, this cannot always be said for young carers who miss out on many opportunities. This could be in making friends with those at school, or missing out on education and skills training. When caring for someone, if you do not get a break then your own wellbeing is at risk.
So it is important young carers have access to breaks and are able to be identified early. When I was young, I did not know I was a young carer, so Young Carers Action Day helps raise awareness to young people who are caring. Once they know they are carers, then it is easier to ask for support and to ask to be identified.
Carers Trust want several things to happen for young carers.
improved support in schools
more access to breaks,
better access to counselling support
and more financial support.
If you want to help spread the message, check out Carers Trust resource pack from the link below
Hello carers, here is another update from most of my carer forums. Usually I try to update on each of the forums, but due to spending time writing books and raising carer awareness, it is not always possible to update each forum page.
Lewisham Mental Health Carer forum update
For my Lewisham group, South London & Maudsley want to engage with the London borough of Lewisham to explain new ideas for mental health services. There will possibly be a revamp of the Ladywell Unit that is based at Lewisham Hospital.
The speakers who looked to engage with carers were Sir Norman Lamb and Bobby Pretap, but unfortunately the meeting had to be cancelled.
The other speaker Angela Brient who is a PhD Researcher in Public Health spoke about the Impact of trauma. Angela spoke about her lived experience, which comes from caring for her husband who sustained a spinal injury whilst on deployment with the Australian Air Force in the Middle East. She was his primary carer for over a year, but ultimately, her husband took his own life.
The carer’s group were grateful for Angela’s insight and we learnt more of the Impact of Trauma course that Dr Julie Langan Martin mentioned to me a while back. Dr Julie is the Senior Lecturer in Psychiatry at the University of Glasgow. We are hoping to hear more updates on the Impact of Trauma course at a later date.
Joint Southwark & Lambeth Carer forum update
For my joint mental health carer forum over in Southwark and Lambeth. Carers were delighted to get engagement from Helen Hayes MP for Dulwich and West Norwood. Carers spoke about their past experiences of providing unpaid care, but the main topic was the progress of the new Mental Health Act. Members of the group are very keen to observe the debate in Parliment.
Other carers were interested to speak to Richard Okolo on how a mental health solicitor could help someone who has been sectioned. Richard could not make the forum, but we hope to hear from him in March.
Ethnic Mental Health Carers forum Update
This carers forum specifically focuses on the experience of ethnic and diverse carers. Our first speaker was a carer on involvement at South London & Maudsley. Currently Maudsley NHS is an anti-racist organisation and seeks to increase health equity. South London & Maudsley NHS is signed up to the Patient Carer Race Equality Framework (PCREF). PCREF exists to eliminate the unacceptable racial disparity in the Access, Experience and Outcomes of Black communities and significantly improve their trust and confidence in our mental health services.
Annette Davis who is the Chair of the PCREF Service Users and Carers Group then gave updates to members. Annette mentioned that PCREF is a UK wide NHS initiative and South London and Maudsley are one of the first Trusts in the country to address institutionalised racism in the NHS. We heard updates on new flyers to advertise to the community on how they can hear updates or get involved in being an activist.
The next speaker Dr Brenda Hayanga spoke about her new research “Ethnic inequalities in multiple long-term health conditions in the United Kingdom: a systematic review and narrative synthesis”. Yes, I know it is a long title, but I do not know many research papers that have short titles.
Still, the importance of this research cannot be underestimated as I had just published my 4th book regarding health inequalities.
Dr Brenda will be speaking at an exciting event in april. The event focuses on Ethnic inequalities in healthcare for people with multiple conditions.
At the event there will be the following speakers
Katherine Merrifield from the Health Foundation
Dr Habib Naqvi who is Chief Executive of the NHS Race and Health Observatory
Dr Jayati Das Munshi who is a Clinical Reader in Social and Psychiatric Epidemiology at KCL.
Eve Riley who is based at Macmillan Cancer Support
Jabeer Butt OBE whose work looks into tackling discrimination and disadvantage.
Dr Brenda Hayanga who is a Research Fellow at the Department of Global Health and Social Medicine, King’s College London
The final update at the ethnic MH carers group was from Carers UK Melanie Crew. Melanie is the Senior Policy and Research Officer at Carers UK. Melanie talked about the new initiative on Good practice guide on supporting ethnic minority carers. The briefing follows Carers UK’s landmark report examining Black, Asian and minority ethnic carers’ experiences of the pandemic.
Obviously my 3rd biggest group, which covers 5 london boroughs. The group is co-facilitated by Ava who is involved at Kingston Carers Network and SWLSTG. The group is getting lots of support from the 5 carer centres.
We had a visit from Kirsty McLachlan who is based at Richmond Borough Mind. Kirsty is the Carers and Parents in Mind Manager and is very keen to promote the forum in our Carers in Mind monthly newsletter. It is great to see support and promotion about unpaid carers.
Our 2nd speaker was Chloe Smith who is the Healthy Communities Builder from Kingston Voluntary Action. She was joined by BBC MultiAward winning Poet, Michael Groce. They are working on a set of poetry workshops aimed Black, African and Caribbean Communities over in Kingston. There will be guest poets that will come and inspire people’s work throughout the weeks ahead by sharing their own stories and work. I was the guest poet for week 2 (more on that later).
You can watch a promotional video below
The third speaker was Wendy Doyle who is the Head of Patient Experience St Georges university hospital. This is one of the hospitals were I run a carer’s stall. Wendy updated our group on the carer’s focus the hospital is planning. Wendy also updated us on a healthwatch report.
Welcome to another carer blog post from Matthew McKenzie
Ever thought why carer centres run carer forums? If you are a carer then you know that you are putting others first. The more unwell that person is, the more care and support you give. There will be times of course that you become isolated, tired and wondering if you are ignored.
Well the things I have mentioned are some of the reasons why carer centres run carer forums. Those very centres usually also run carer peer groups. It gives carers a chance to be listened to and also be heard. Carer peer groups and support groups do not really give carers a chance to be empowered, but they do provide support.
If you are lucky enough to belong to a carer centre that runs a carer forum, then you have a chance to become empowered. You might be wondering what Matthew is on about. Well give me a moment and I will get to the reasons why it is so important to attend and support your local carer forum.
Ever heard the saying “Nothing about us without us?”. The very quote came from disability rights activist James Charlton. If you are caring for someone, then services provided for them will be decided if you are involved or not. This goes double if you are using carer support services.
It is all fine that carers scramble to use support services to reduce isolation, be given guidence and join in carer activities. There does come a time when carers get a little bit tired of being told what suits them. So carer forums give carers a chance to request what services would be useful. It is so important that unpaid carers be empowered to use their voice, not only to update and tell their carer’s story, but also to give input regarding the services they use.
If you are providing unpaid care then these services could be carer assessments, carer hubs, access to skill development, learning about upcoming events and a whole lot more.
A healthy service is one that includes the user’s voice and this is the same when it comes to unpaid carers who use carer centre services. If you are providing unpaid care, you do not have to be an expert to attend and support your local carer forum. It can be fine to just attend and listen to updates. It takes a long time to become an empowered carer and many carer services can be complex, especially if your carer centre is involved at your local authority carer strategy.
Without a carer forum running from a carer’s centre then the risk is carer services will take guess work in what carers want. So it is so crucial that carer members new or veteran attend their carer forums.