A Request - For Human Kindness Sake

 

Plaid Cymru leader Liz Saville Roberts struggled 
to hold back her tears at Prime Ministers Questions 5.1.2022
when she spoke of her fear that her mother's dementia diagnosis 
would also mean separation from her family
when she was moved into a care home.

Now Liz is one of four MPs ready to introduce legislation
 to ensure we all have the right to maintain contact with a family carer
wherever we are in the health and care system

Today, Monday May 8th is National Help-Out day -- which may well mean that by tomorrow, when this blogpost is published (March 9th 2023), everyone’s impulses to benevolence will be as exhausted as the final damp squib from a village playing-field party.

So maybe I’ll pitch this request as enlightened self-interest...

If you have a stroke today, or a traumatic brain injury, if you develop a cognitive disability (such as a dementia) or any one of the array of incurable illnesses which will make you progressively less and less able to fend for yourself (old age and frailty included), would you like to be sure that someone who loves you will be welcomed to come to you, whether you are in hospital, care home, mental health unit or any of the other institutions of our health and care system? When your spouse, partner, parent, child, dearest friend or relative is unable to manage alone and leaves their home – perhaps for ever – do you, in turn, want to know that you will reliably be welcomed to come and reassure them, speak for them when they can no longer speak for themselves, hold their hand until the end of time? If, tomorrow, you attend an appointment where you may be told that your cancer is terminal or your baby dead in your womb, will it seem appropriate that the room is filled with clinical specialists while your husband or wife must wait in the car park?

Because these are actual situations that have happened, are happening and will continue to happen – randomly - unless we now establish that all of us have a right to be supported by someone we love when we most need them.

That’s as long as they are willing and able to offer that support.

Every day is a National Help Out day for family carers. The money they save the state is worth more than the entire NHS budget. They are the ultimate volunteers and should never be taken for granted – except by the person they love and who loves them. The only duty on health and social care institutions is to welcome them, support them, work with them and facilitate their access, as appropriately and safely as any paid member of the clinical or caring staff.

I’ve said this before, I know. There are three things which are different now.

1.       June 6th 2023 Westminster: a meeting for MPs and the initial introduction of legislation

Tracey Crouch MP attended the first Campaign Meeting in Portcullis House on 9.3.22
She said that she had arrived undecided and was convinced of the need for legislation
'within about 10 minutes'


The first is that we have another Campaign Meeting arranged in Parliament for MPs and peers to hear from people who have been denied this essential human kindness. That’s on June 6th Portcullis House, Westminster 10am. After that four MPs Dan Carden (Labour), Tracey Crouch (Conservative), Daisy Cooper (LibDem), Liz Saville-Roberts (Plaid Cymru) will bring a 10 Minute Rule Bill to the Commons, that will introduce legislation.

It will apply to this unique category of essential ‘care supporters’ or ‘care partners’. It’s not about general visiting arrangements. The Government will have the chance to take it up and bring it into law. The Opposition will have the chance to make it a manifesto pledge and bring it into law - if they gain the power to do so. A Private Member with a place in the parliamentary ballot can take it up and use any support generated by our campaign among other MPs and peers to bring it into law. With your help, we believe it could happen.

2.       Expert drafting for a new legal right

The legislation must be fit for purpose. Two experienced lawyers, Carolin Ott from Leigh Day and Tom Gillie from Matrix Chambers have been working, pro bono, to map a legislative pathway that would establish a right for the individual to be supported by someone personal to them, with a corresponding duty on the health and care institutions to facilitate this. Such legislation needs to be robust and straightforward. It needs to dovetail with existing law and not impose any additional cost on a system that is already under strain. Tom is a specialist in equality & human rights, employment and public law, including the law of political parties and Parliament. His involvement may be a gamechanger.

3.       Involvement and constructive support from Health and social care providers

Any legislation needs to be workable by the health and care professionals who will be required to implement it. The third positive step – another gamechanger? -- is that the Care Provider Association is taking an active interest in understanding and discussing this. They represent an impressive variety of different organisations involved in providing social care. Many of their members are individually pledged to support the principle of a legal right. Our campaign partners Rights for Residents and the Relatives and Residents Association have now joined forces and are working with tremendous energy and success to explain our shared aims to a wide range of organisations and individuals who may choose to pledge their support.

I am personally proud to be part of the NHS Care Partner Advisory Board, managed from the NHS England Nursing Directorate We have been meeting monthly since July 2022 to develop a system-wide Care Partner policy which will soon be available for stakeholder discussion. This is exciting and the developing links between the NHS Care Partner Board and the Care Provider Association are exciting too.

People are helped to understand the importance of working together when they recognise that in their private lives, many nurses and care-workers, doctors, nurse leaders and social care senior managers have also been denied access to people they love in their hour of need. The Right to Maintain Contact matters to us all.

 

Daisy Cooper was convinced of the need for a new legal right
by listening to the experiences of her constituents 

Why legislation is needed now

Separation and isolation still happens. Only a few weeks ago I was told of an NHS doctor from one London hospital being removed – by security guards! – from the elderly care ward of another London hospital where he had gone to check on the condition of his 90-year-old father-in-law when the ward sister had ruled that only certain patients could be visited. The Secretary of State for Health is said to believe that ward sisters should have the power to make their own access arrangements. I can’t agree.

For more than eight years Nicci Gerrard and I have been working to establish the John’s Campaign principle that people living with dementia or other cognitive impairments should have the right to support from their family carers whenever they need it, if they are in hospital or other institutional care and if the family carer is able and willing to offer this support. We always assumed that goodwill, understanding (and some knowledge of Equality law) together with human kindness would be sufficient to ensure this. Often this has been true. We have met some truly wonderful people (many of them Johns Campaign Ambassadors) sticking to their compassionate and ethical principles in the most difficult of circumstances. But it has not been sufficient.

Public trust in both the NHS and social care is at an all-time low. We cannot fix the staffing crisis, the underfunding, the low morale. Yet if this law is passed we, the potential patients, residents or service users, in this huge and often fragmented system – may begin to regain some confidence that wherever we find ourselves in our time of need, the person who understands us best, who can still bring joy and meaning in our lives, will be welcomed to be with us (if they wish) for our sake and their own.

That’s why we need to go to Parliament again. Many people can dish out guidance, write policies, make up ‘rules’ but it is the job of elected MPs to make law. So, we need to let our MPs know what we would like them to do. Please will you ask your MP to familiarise themselves with the issues, get in touch with Dan Carden, Tracey Crouch, Daisy Cooper or Liz Saville Roberts, attend the meeting on June 6th and give positive support to legislation for the Right to Maintain Contact.

Dan Carden MP and his mother were refused access to his terminally ill father
because he was not
'actively dying'
Dan is leading the Campaign for a legal right to maintain contact

They should do it because you ask them but they would be wise to remember that they too may find themselves in hospital, care home or mental health unit, in desperate need of the person they love. They too may come to understand the equivalent need to be welcomed to offer such essential support. As Dan Carden’s mother said, when she was denied access to her terminally ill husband because he was not deemed to be ‘actively dying’.

“This meant that instead of being able to focus on caring and supporting my husband through his final weeks, we had to battle with the hospital to see him. The trauma of my husband’s death—and in particular the neglect he experienced in his final weeks of life—remain with me. It is almost exactly one year since Mike was admitted to hospital, where he spent the last month of his life, and I am still overwhelmed each time I attempt to talk about what he went through.” (quoted by Dan Carden MP Hansard 27.10.22)

Our Request

Please – for your own sake and the sake of those you love, contact your MP and ask her/him to support this new legal right to maintain contact in health and care settings. No one should be kidding themselves that they might never need this right.  If you work in health or social care please respond as an individual, thinking of those you love and those who love you. It’s a legitimate reason to contact your MP and this is how you do it.

https://www.parliament.uk/get-involved/contact-an-mp-or-lord/contact-your-mp/

There are other steps you can take as an individual or an organisation

https://www.relres.org/care-supporter-call

but for now, please send a message to your MP and ask them to support this essential legal right.

Comments

Susan Price said…
Julia, I'm astonished reading this.

My father lived in a care home for a few months, and died there. My family visited him every day, round the clock. His sister visited early in the day, my brothers in the afternoon and evening, whereas I would often turn up late at night and sit with him, watching tv and chatting until he fell asleep. We were always admitted and made welcome, asked if we wanted a drink, offered breakfast if were on 'the early shift.'

I thanked the manageress for this, one day, when I met her in a corridor. She said, "This is my resident's home. Their visitors are welcome at any time, as they would be in their home."

I was impressed, but thought this must be standard practice in care homes. Now I wish I appreciated her even more.

More power to you in your work!
Julia jones said…
Dear Sue - and that's exactly how it should be. I cared for my mother in her care home by going every morning and every evening for 2 1/2 years until she died and my carer friends and I wept together. But even before the pandemic that was not universally the case and since then the Just Say No mentality continues to run riot both in hospitals and care homes. It's shocking and drags the good people down
Peter Leyland said…
Hi Julia, I read this lengthy and impassioned piece straight through over coffee. Just as many of us will remember parental deaths to a greater or lesser extent, I recalled the last picture of my father dying of MS 60 years ago today. The Liverpool hospital provided more than sufficient care.

But now, as I was walking home in the rain, a cyclist braked past me on the narrow path and I wanted to shout, Why didn't you ring your bell!!

Sometimes we are too polite and hesitant to complain but I am going to contact MP Greg Smith this morning and put the forward case you describe.

Peter Leyland said…
Now done. I hope he will respond to my email. John Bercow did when he was our MP some time back so I am quietly confident.
Julia jones said…
Thank you very much Peter. Hospitals and people's experiences within them vary wildly - almost from one ward to the next. Those who do welcome carers find their their own load is lightened and their patients tend to do better, even if they cannot recover -- but the message does not get through to the Nay-sayers. Some variation is probably inevitable but there must be an agreed based line. Very grateful for your help. Hope Greg Smith responds
Well said, Julia - my husband died during the pandemic, when the rulws were understandably strict, but the family had to say goodbye to him on a flaky web link that only worked on one kind of hardware which some of us didn't have access to, and I will never forgive the NHS for not finding some better way. We didn't actually know that was the last time until later.
I completely support this - it seems only humane and I am aghast that it doesn't already happen this way.
This is long overdue. My mother had a stroke in 2018 from which she never recovered and was being cared for in a nursing home when the pandemic hit... I was not allowed to visit her for 2 years, and now she is dead so it's too late. Thankfully, my father got special permission (eventually after much nagging and heartbreak on his part) to visit her each day, which I think saved him as much as her, although each time he had to wear a plastic suit plus mask and gloves and jump through all the pandemic hoops before they would let him in. In many cases, it's not only the person needing care who is affected by such isolation from their loved ones, since family members may suffer emotionally in the longer term. I know Dad tried to get her home, at least temporarily, but she was judged to need too much care so it never happened.
Julia jones said…
Dear Cecilia and Katherine. I am so sorry to hear your family experiences. I am sorier still to know that they are not untypical. Of course comings and goings had to be reduced where possible -- but not between husbands and wives (or equivalent) Completely unethical and very very damaging -- and just plain silly when care homes and hospitals were so short staffed Families are not substitute nurses or carers but they bring quality of life. Make it worth living. Our proposed right is just to ensure most basic protection for access of the most vital people Please could you just say the same to your MPs that you have said in your comments? I think NHS wants change too -- they are developing a Care Partner policy -- but it'll just get put aside at the first sign of trouble and there are some ward sisters and care home managers who don't mind saying that they get on much better without familes. Only a minority of course
Peter Leyland said…
Dear Julia,

I have yet to receive a reply from Greg Smith regarding the 10 minute rule bill due to be debated on June 6th. I have reminded him as he is supposed to respond within 10 working days and he received my email on 9th May.

Here's hoping something will happen regarding the introduction of the legislation you are campaigning for.

Peter

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