Hello carers. Below is an exciting new project from The PSC aimed at improving access to digital information for carers.
The project is led by Southwark Council, but also includes the 4 other London boroughs in the South East.
The project looks to how a new or improved digital offer can respond to carer needs, and help unpaid carers across SE London get better access and use relevant information, advice and support.
It is important that carers are aware of 3 things, which the project aims to improved.
The need to know the term carer, rights and services that are available to unpaid carers.
The need to care for their loved ones well as needing to care for themselves as carers and their family
Plus the need to plan the care now and in the future
To voice interest in the studies 1:1 interviews, please email heather.mctaggart@thepsc.co.uk and/or shuying.xu@thepsc.co.uk.
Interviews are approximately 45 minutes and your time will be remunerated with a £20 voucher or £20 donation to a charity of your choice.
No one rushes to be a carer, usually most people plan to care for loved ones when they are much older, but life is not often like this. Life is complex, unexpected and has its ups and downs.
You did not expect this day to happen, but here it is. The person close to you has suddenly become unwell, it could be a close relative, a lonely neighbour or a dear friend. It’s different for everyone depend on the relationship, but no matter what the definition is going to be the same. You have become a carer.
What next? What will you do?
There is no hard and fast guide, a lot depends on your resources, support or connections. Caring for someone even depends on knowledge and information, but most of all caring depends on the care given. You know you will probably have to do this, there still is a choice, but are you prepared to live with the consequences?
No one should be forced into the caring role, no one should be that reluctant carer, but that day has arrived. Depending on that relation, you want to be there for someone, you feel you have to try. It might be out of duty, it might be out of love or sympathy. You want to care and you have made that decision.
You are going to care…..
Yet you are not fully aware what you have prepared yourself for. Until you and the person you care for know what the diagonsis is. You are hoping and praying that it is nothing too serious. You have a lot on the line. You do not want that person to suffer their quality of life. You also have plans, dreams and ambitions. All this has been sudden and you just do not feel prepared. You feel anxious on what the future brings, but you want to be there. You want to be there for that special person. It is all up to you because there might not be anyone else around to step in.
Then it suddenly happens.
You are told that diagnosis by a health professional. It does not sink in right away, for some the diagnosis brings relief. Some people know what they must tackle and this is all information. For other people the diagnosis could being heart felt grief and sadness. The diagnosis of the medical illness could be life threatening. It could be a demanding role, but you have already made your decision. You are going to be there, you are going to stay with the ‘cared for’ until as far as you can go.
It is just you still are not fully aware. No one has told you that you are now defined a carer. You think it might be a paid care worker, or a professional carer. You think that you are not doing anything special. You might be the husband, wife, daughter or son. You are just doing what is expected of a close relation, but it is hard.
It is so difficult….
You have to advocate and chase up information for your loved one. You have to cook and clean, check and double check that the ‘cared for’ health is not deteoriating. It is like a juggling act, you are careful not to upset the person you are caring for. They are emotionally struggling with how their life has turned out. They maybe upset that they have to rely on you, then again they cherish that you are standing by and ‘caring’ for them. Yet day by day, month afer month and onto the years, it could get harder. It takes around 2 years before many know they are a carer, but should it take that long?
Should you step back and focus on your own health and wellbeing needs?
Other people are telling you that you need a break, others say you need to know more about what you are caring for. Some people say you should join a carers group. Whatever others say, you being to feel guilty. Is it that bad to focus on your own needs once in a while?
No it is not bad to take time to focus on you.
We cannot care for others if we neglect our own health and wellbeing needs. There is stigma in the caring role, we can all agree on this. Many do not want to be defined as a carer, but that is ok. What is more important is that we get the help and support we need to provide the best care possible. It is not always about caring for others, it is also about caring for ourselves.
If you have found out that you are to do that caring role, ask health and social care services what support you can get as a carer.
Hello Carers. There is a new research opportunity for carers of those using mental health services. The project is being carried out by Lewys Beames, PhD Student from Kings College London. Lewys will also be attending my ethnic mental health carers forum, which is many of the groups I run voluntary to give carers a platform for engagement and updates.
The project focuses on people who access mental health services will receive care and treatment for a time in a hospital ward or inpatient setting. In these settings service users are sometimes subject to practices which may be experienced as forceful or restrictive, such as physical restraint (being physical held by trained mental health staff) or being forced to take medication. These types of practices are commonly and collectively referred to as coercive practices.
We know that service users and carers can find experience of coercive practices distressing.
The purpose of this project is to ask about and understand the views of mental health services users, informal carers and inpatient mental health staff on coercive practices and ideas of how to improve experiences for service users and informal carers where coercive practice has occurred during a psychiatric inpatient admission.
As informal or unpaid carers, this is your chance to give feedback.
For more information, you can contact
Lewys Beames, PhD Student Department of Psychology, Institute of Psychiatry, Psychology & Neuroscience, King’s College London Email: lewys.beames@kcl.ac.uk Telephone: 07876875892
Welcome back to another blog post by Carer Activist Matthew McKenzie FRSA BEM. Notice something different here? Those strange titles at the end of my name.
Yes, its true, for 2024 I have been awareded a BEM for the kings honours list 2024. It is an amazing archievement to be recognised for my work to carers. I am sure to blog more about this later on, but for now I am back in activist mode.
Here is an update from my London Cancer Caregiver forum for December 2023. The London Cancer carer forum is one of my newest carer groups aimed at those caring for someone with Cancer. The forum allows a platform and network for carers to be heard, feedback and strengthen their identity. The group gets support from MacMillian, cancer alliances and surrounding hospitals.
I was quite unwell in December due to a nasty bug going around, but managed to run the group anyway. We were joined by Nilufa Lais from Marie Curie.
Marie Curie is a charity that provides expert hospice care wherever it’s needed. Their hospices help people with any illness they’re likely to die from, receive the support they need. This includes those that help care for them.
Marie Curie push for better end of life for all by campaigning and sharing research to change the system. Usually I would focus on those caring for someone with cancer, but at my carer stalls at the hospitals, I keep encountering carers whose loved ones are nearing their end of life.
Carers would ask me about end of life support, or they would talk to me about being lost in the system and not being heard as carers. Eventually I contacted Marie Curie as a network to support the London Cancer Carer forum.
Marie Curie were very kind and sent Nilufa who is a social worker based at Marie Curie Hampstead Hospice.
MARIE CURIE INTERVENTIONS
Nilufa talked to our group about what Marie Curie does. She mentioned about the different initiatives they have in place for carers. Marie Curie has a multi-disciplinary team to help identify carers who need support.
Nilufa gave a brief introduction to their Patient and Family Support Team, which consists of a variety of Professionals
Spiritual Lead Lead Art Therapist Lead Counsellor and Bereavement Co-Ordinator Principal Social Worker Lead Complementary Therapist Other social workers
We are hoping for updates from the team to my London Cancer carer forum at a later date. There might be a different set up at the other hospices Marie Curie has at different sites.
Their team offers different types of care to patients and carers. Carers are relatives/ friends of in-patients and out-patients, after care support as well. The primary carer is identified by the Patient.
At the hospice there is access to both emotional support and spiritual support, where you don’t have to be religious in order to access support from the Spiritual lead who provides a holistic form of care. She also has links to other Spiritual leads in the community and supports patients to access them if requested.
Other social workers can provide Emotional support, support with Housing, Finance, Benefits, Funeral Planning, Family issues, Safeguarding.
With the Art therapy it is for relatives who want to express themselves through Art and for those who want group sessions both are provided. Michele also holds online sessions of support for carers.
CARERS INVOLVED
Nilufa spoke about the number of carers involved, where Marie Curie provided a variety of support to post patient death, and the carers who appear every now and then. From January to September they conducted a Community Engagement project — speaking to people in the community about Death and Dying.
Marie Curie are in the process of recruiting a Children and Young person counsellor / Family counsellor to support children and young people. They also signpost onto relevant services if requested and they work closely with other Bereavement services at Marie Curie, as well as making referrals to external Bereavement service such as Winston Wish.
Nilufa finished up on campaigns they are working on as well as exchanging new ideas on how to engage more with carers. The following questions were asked at Marie Curie from our London Cancer carer forum.
QUESTIONS ASKED AT FORUM
What services are provided at other hospices? Is there a national policy on coping with death that Marie Curie follows? Does Marie Curie work with MacMillian on any projects? What is the pathway for carers to be included at Marie Curie? What are the majority of diagnosis for patients at Marie Curie? Who does the campaigning for better quality of treatment?
This is a brief update for my London Cancer Caregiver forum. I will try update for my other groups including ones that focus on those caring for someone with mental illness.
For more information about Marie Curie charity, see below
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.
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.
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.
Calling carers from Black African and/or Black Caribbean communities in Lambeth. There is an exciting project that asks for your views.
It has consistently been shown that black men have the poorest experiences and outcomes when it comes to mental health services. So Healthwatch Lambeth wants to hear your experiences of caring a male relative who has a Serious Mental Illness, been hospitalise as a result of their illness and then discharged to their GP.
This is a core part of Healthwatch Lambeth’s new mental health project and each carer would receive a £15 shopping voucher for their time.
The borough of Lambeth want those to recover, stay well, and lead a fulfilling life.
Lambeth Healthwatch also wants to talk to carers as they play a key role in supporting people with a Serious Mental Illness.
To share your views, please contact Anna D’Agostino at 07737 599224 or email Anna at anna.dagostino@healthwatchlambeth.org.uk
Welcome unpaid carers. There is a new research Opportunity from the University of East London.
Carers can play a vital role in supporting someone with psychosis, particularly when an inpatient admission is needed, but unfortunately are often left out of important conversations. I’m hoping that this research can go a small way towards including carers’ voices in the discourses around restrictive practice/the development of inpatient services.
Alison Byrne who is a Trainee Clinical Psychologist at the University of East London is looking to reach people who are:
Over 18 years old
A relative or other carer (including friends) of someone who experiences ‘psychosis’ (e.g. delusions, hallucinations, or other unusual experiences; a formal diagnosis is not necessary)
Their loved one has had at least one admission on a UK inpatient ward relating to these experiences
Welcome to another blog post from carer activist and author Matthew McKenzie. I am updating carers on an important conference held once a year. This is the National Children and Adult Services Conference (NCASC), which is a three day conference for elected members and senior leaders in local authorities with responsibility for, or an interest in, the delivering effective services and opportunities for children, young people and adults.
The conference is promoted by The Association of Directors of Adult Social Services (ADASS), The Association of Directors of Children’s Services (ADCS) and The Local Government Association (LGA).
The 2023 conference was held over at Bournemouth International Centre on the 29th of November.
Hot off the heels of Carers UK report on ethnic minority carers. Carers UK provided a briefing follows Carers UK’s report on the experiences of Black, Asian and minority ethnic carers during and beyond the Covid-19 pandemic.
As co-chair of the Carers UK ethnic advisory group, we brought together charities and carers from diverse groups who provided feedback and updates on how the community can support carers from diverse groups. You can see the briefing below.
Taken from Carers UK site “Many carers from Black, Asian and minority ethnic minority backgrounds do not often recognise themselves as carers, with some languages lacking a distinct word for ‘carer.’ They may instead primarily see themselves as a family member, due to cultural expectations and not access resources available to them as a result.”
It is important to spread carer awareness and good practice at every occasion. So with the up and coming National Children and Adult Services Conference (NCASC), I was delighted to be given the chance to give my thoughts on the positive difference the Carers UK ethnic carer advisory group had made. I wanted to talk about the following.
The difference Carers UK made for ethnic black and asian carers
The challenges minority ethnic carers faced
Good practice examples from organisations working hard to make a difference
What I would like to see for the future
On the day I visited many stalls focusing on social care and support for those caring for them.
It was not long before I found myself at the main enterance hall listening to speakers on how they will drive social care for the country. It was exciting to hear Beverley Tarka who is the ADASS President (Haringey director for adults, health and communities).
Beverley talked about her mission to include carers as a key focus for inclusion in social care. ADASS who is a membership charity, a leading, independent voice of adult social care are launching their Carers Challenge 2023.
The carers challenge is about inspiring ways to provide better support for unpaid carers.
It’s a challenge to social care teams and people working with them to tell the story about how they’re making a difference to unpaid carers in their community.
The aim of the challenge is to bring those stories together into one online storehouse of great ideas that anyone working in care can use to inspire what they do next to improve support for carers.
It was not long until we were up to do our talk about Carers and diversity. I was joined by the following.
Claudia Brown who hosted the session and facilitated the Q&A section. Claudia is the Co-chair, ADASS Carers Policy Group and Director of Adult Social Services, Brent Council.
Abinaya Kamalanathan who spoke about how Wandsworth carers centre worked with LGBTQ+ carers. She is the Carers Support and Development Officer and LGBTQ+ Project Co-ordinator at Wandsworth Carers Centre
Last but not least we had Melanie Crew who is the Senior Research and Policy Officer from Carers UK.
Melanie spoke about the work Carers UK had done to reach out and support diverse groups of carers.
Overall I enjoyed taking part in the conference. It was brillaint to speak about the work Carers UK and others have done and I learned so much from the audience who asked thoughtful questions.
Welcome to another blog post from carer activist Matthew McKenzie. This blog post updates carers and other organisations who wish to know more about triangle of care. As a Cygnet network ambassodor, I have becoming involved in helping to shape carer and family engagement at Cygnet.
It has been over a year since Cygnet launched their Carers Strategy over at Cygnet Churchill. It is not December 2023 and we have come a very long way. Through carer network engagement events around the country and updates of policies to support and inform families and carers.
During 2023, several of Cygnet hospital sites have implemented the Triangle of Care scheme on their wards. For those who do not know about Triangle of Care, it is an Accreditation hosted by national charity Carers Trust.
The Triangle of Care promotes six principles to improve engagement towards families and carers of those using mental health services:
Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
Staff are ‘carer aware’ and trained in carer engagement strategies.
Policy and practice protocols regarding confidentiality and sharing information, are in place.
Defined post(s) responsible for carers are in place.
A carer introduction to the service and staff is available, with a relevant range of information across the care pathway.
A range of carer support services are available.
Through a peer review, Cygnet were delighted to be awarded the Triangle of Care badge for the sites the successfully completed the triangle of care stage 1.
So for the 1st of December 2023, Cygnet hosted a christmas celebration party for all those involved. Carer ambassadors, cygnet staff and some others were in attendance.
We also welcomed others who are also looking forward to being part of the Cygnet Carers Network and also to promote mental wellbeing.
Four Cygnet sites have all been awarded the triangle of care badge to show they have made improvements and passed stage 1 Triangle of care. The sites were Cygnet Hospital Sheffield, Cygnet Appletree, Cygnet Fountains and Cygnet Hospital Hexham.
At the Christmas event we had the following congratulatory speeches from David Wilmott, Director of Nursing at Cygnet Health Care. We also had inspirational speeches from Vicky McNally, Director of Partnership & Engagement and Laura Sheridan who is the Group Service Improvement Manager.
Several awards were handed out and a special thanks to carer Karan Ibrahim who helped shared stories and supported carer engagement.
Throughout the event, attendees shared ideas and suggestions on the way forward for Cygnet via their Carers Wish list. This gives a chance for others to help shape the vision for carer engagement at Cygnet.
Congratulations to all 4 Cygnet sites, which can now set an example to other Cygnet sites to make a differance through the implementation of Triangle of care. Here is to 2024.
A Caring Mind 