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
A Caring Mind 