Hello fellow mental health carers and readers, been a while since I have been blogging due to working on my new book called “Race, caring and mental health”. This book will be my 2nd release for 2022, the book will reflect how mental illness impacts on carers from ethnic minorities especially black people. I hope to get that book out for November 2022.

Going away from promoting my new book, this is just a quick blog for my Lewisham mental health carers forum. A forum aimed at those caring for someone suffering mental illness.

The speakers for October 2022

Marie Cooper RGN BSc MSc (Florence Nightingale Foundation) – Pallative care “walking the walk”
Evelyn Sample (South London & Maudsley NHS Trust) – Approved Mental Health Professional / Mental Health Act presentation

• Marie Cooper presents on Palliative and End of Life Care

Marie Cooper who is also the Project Lead for Palliative Care Nursing at St Christopher’s wanted to understand the experience of the carer when its come them supporting a loved one coming to the end of their life. Marie mentioned when it reaches that stage, the term for that person becomes more personal as they see themselves more than just carer. They are perhaps a family member, a loved one, anybody of importance to that person.

Marie mentioned it is really important to hear the voice of the relative or person experiencing their loved ones end of life care. Marie started off by showing a few pictures of hospital rooms.

In her talk it was stated that in hospitals, where someone was visiting a loved one or someone who had died. The experience of walking through the hospital or the bereavement suite makes a big difference in someone life, this will stay with them forever. So the project Marie mentioned was “Walking the walk” as Marie and her colleagues would become the carer as they walk through the wards. They travel right through the hospital into understand the entrance, the experience of what that family might be going through as they visit a loved one who has died. Marie focuses on emotions of that time, some people are rushing to get to where their loved ones are, or the people being there for days waiting and attending to their loved one and what support is there for them.

The overall aim of the project is to improve the experience for the family and the friends, anybody. What they did was they worked with 25 hospitals, those being 25 acute trusts over the past and pre COVID period. They have just done the Evelina hospital for Children with parents, which has been a very powerful experience. That hospital is formed from Guys and St Thomas NHS FT.

As mentioned in her talk, Marie literally walks through the hospital, they do the walking, and this would be a team of four of them. They would visit all the public sites, look at the toilets, look at the phones, look at the cafeteria. They would take photographs and eventually they report back to the hospital to get feedback on improvements. In the end it just gives them a chance to speak to the nurses, the doctors on what their experience of people coming to the hospital in their last days? What’s working well, what would they like to see different.

Marie and her work partners look at four areas, they look at the environment to practical facilities, is it clean? Is it comfortable? Is it hostile? Is it something that they would want to sit in which is accessible? They also talk to families to get their experience e.g. caring for my loved one for many years? Can they still care for them? How much can they be involved in the care of their loved one? Then thirdly, what support is there for that person? Have they got Wi Fi access at that hospital site? Can they get access to food? Can they park? Can they shower? Can somebody be their key person? tell them what’s going on so they can support their loved one? Plus what about the care after death? What care is there for the person after that loved ones dying. So they look at all those four elements as they traveled through the hospitals.

Marie should has a picture slide of waiting rooms at a children’s hospital. The experiences when children die, the memories and all the incredible work in children’s hospitals and hospices around trying to contain those lost memories, and about how to show a child are still being cared for after their passing, through the use of fabrics and cots and other furniture. So that in keeping the personhood of that deceased person relevant and respected that the family might be find helpful and comforting in future.

QUESTIONS FROM CARER MEMBERS

Is there capacity for cultural improvement for the experience of pallative care regarding ethnic minority carers.

Do You get any push back from Chaplin services as hospitals?

I run a carer stall at several hospitals, What can you say to someone who’s going through a difficult time when their loved one has died or is dying?

How can mental health trusts take on the programme? People do not die as in a planned state, but pallative care is a concern due to sudden death or complications from mental and physical health.

One person mentioned that their are two end of life care situations that comes around in different ways. For some people it’s planned that they’re goning to die. Often in certainly adult mental health services, we don’t always know when people are going to die. It is usually quite traumatic and when they do die, either through suicide or premature death, because they’re physically unwell, we are not sure if we have a sort of clear cut response. Often, there’s lots of practical things that we might help families after, but from the presentation there are a lot of things to query.

It was raised that the way carers centers respond to end of life, is that they would not normally stop someone’s membership when they cease to become a carer. Because they know that that’s a really difficult time, and they’re going to need help, sometimes they might keep them for like 18 months after to help them, especially if their caring role has been their full time job and their identity, they would help them sort of replace it with other things, volunteering, getting back to work, that sort of thing. It would be bad pratice to tick a carer off membership if their loved one passed away, but then it is also a decision for the carer.

Are pallative care policies updated at mental health trusts compared to accute trusts?

One person responded I don’t think or I’m not aware that we do have a brief new policy, we have a certain minimum as unfortunately and tragically, a very high disproportion of our service users die prematurely. The experience and impact of death has a huge strain and trauma on the carers health.

As in the past there are a number of our service users who commit suicide and when there is an incident then there is an investigation process that goes into reviewing the care that was provided to that individual.

• Evelyn Sample presents on the mental health act

Evelyn looked into the role of the nearest relative under the Mental Health Act and how it’s changing in the coming years. She is aware for a lot of carers that the Mental Health Act and the functions of the nearest relative are quite confusing. So she thought that she would talk to us about what the nearest relative rules are and why some people are nominated as the nearest relative. Plus how and what are the rights and responsibilities of the nearest relative and how that might be changing.

Evelyn reminded us that she is a mental health social worker, which means she is an “Approved Mental Health Professional (AMHP)”. Now the approved mental health professional historically has been as A role that was exclusively for social workers. Since 2008, it has been possible for non social workers, nurses, occupational therapists, psychologists to have that role.

Evelyn feels what is really important is that people have information about the role of the nearest relative, because what happens as an AMHP is that you are assessing someone under the Mental Health Act, either you’re planning an assessment that’s going to take place in the community or you’ve been asked to assess someone who’s already an inpatient in the mental ward. This could be because they have come in as an informal inpatient, and they are now having a mental health assessment on the ward.

The function of the nearest relative is to provide a safeguard under the mental health act. So in order to ensure that people have person/patient interests and also they have the person’s well-being considered. The nearest relative has an important role other than the doctors who are involved in making recommendations for detention, or the amp who is employed by the local authority to also act as a safeguard.

The idea is that the nearest relative is intended to be the person who is thought to be closest to the patient, and who therefore knows them best, and is able to, to act in their best interest.

When the Mental Health Act was originally devised in the early 80s (1983), the current Mental Health Act, used as a sort of table for identifying new relatives. That table now seems quite outdated so therefore there was a proposal to change the act so that people can actually choose the nearest relative. Evelyn mentioned they have a system where the nearest relative ( Section 26 of the act). says if you are the husband or wife or civil partner of a person, then generally you will be the nearest relative. Then the table goes on from there.

Husband, wife or civil partner
Son or daughter
Father or mother
Brother or sister
Grandparent
Grandchild
Uncle or aunt
Nephew or niece

The issue is that it is a rigid order that is set out in the law that determines who is the nearest relative? And currently, the amp and the patient have little to no say over that.

The proposal is that under the Under the new Mental Health Act that’s coming in; Mental Health patients in advance of mental health assessments, when they have “capacity” to do so will be able to nominate their OWN nearest relative and choose the person that they think will best reflect their their wishes, and will act in their interests.

So this change is going to be significant in the legal situation, assuming that the The bill has not yet gone through Parliament, which is about increasing the patient’s choice, and enabling patients to be more involved in the decisions around there care and treatment.

QUESTIONS AND STATEMENTS FROM MEMBERS

Sometimes the nearest relative is usually the carer or friend. So when it comes to the nearest relative, could it not be changed to “The nearest relative or carer?”. Because sometimes the nearest relative might be 100 miles away.

Can the nearest relative refuse because of bad history with their parents, whether they’d been abused and they just they just basically have cut links can they refuse if they were contacted?

Do you have any like sort of queries or concerns regarding the new changes to the mental health act? and the second question on is there like a list somewhere on like the duties an AMHP that could be tailored to how they deal with unpaid carers?