By the time you read this I'll be...

In the Thatcher room at Portcullis House, Westminster at a cross party meeting of MPs lobbying for a new right.

This lovely young woman is 27 
yet her disabilities are such that she is 
at the level of a toddler.
Should she be restricted to interaction 
with her mother behind a perspex screen? 

In fact, it’s such an old and basic human need that it’s astounding that it must be lobbied for. We are asking for the legal right for patients, residents or service users in the health and care system to maintain their closest personal relationships and be supported, in time of need, by someone who loves them. 

And it's not 'them' - it could just as easily be me, or you.

Imagine that you're living with some disability, impairment or trauma which means you can’t manage the system for yourself. You need your cognitive guide-dog, your back-up brain - your spouse, partner, dearest friend, child, parent, sibling. The person who you have chosen and you trust. The person who knows you best.

Nurses, care-workers, doctors and therapists have their professional skills and a responsibility to do their best for you. But if you can’t understand what they are doing and why; if you’re not sure where you are or why you’re there; if you can’t ask the professionals these questions and understand or remember the answers – you’re unlikely to thrive. Similarly, if you are living within the system in a state of dependence and vulnerability, possibly in a collective environment that you’ve not chosen for yourself, then you have an additional need to know that there is someone to whom you are always special, who knows and cares particularly for you. Someone who, at some deep level, keeps you safe.

I am not now talking only about people with dementia or learning disability or frailty or autism or head injury or strokes or MS or epilepsy or the whole range of extraordinarily disabling syndromes and conditions that I never previously knew about. I’m not only talking about people in care homes or hospitals or mental health units or rehab units or supported living or extra care or community hospitals or GP surgeries or specialist clinics or A&E. I am talking about anyone anywhere in the health and care system who cannot advocate for themselves or who cannot assume that their choices will be respected, or their consent properly obtained.

These people now need the statutory right to a #care supporter. We've found a parliamentary draftsman to express this for us in legal language. We know that the Secretary of State has the power to insert this in the Health and Care Act currently going through Parliament.

It's possible to argue that the right's already there. There’s the Equality Act, the Mental Capacity Act, the Care Act, the Human Rights Act. There are powers of attorney, guardians, next of kin. There’s Government guidance on Essential Care Givers in care homes, there are John’s Campaign pledges in hospitals. There’s the NHS Constitution, which no-one remembers. Yet nothing has worked reliably – except sometimes for the people whose relatives fight the hardest. Or those who are lucky enough to meet the special health and care professionals who have the imagination, humanity and the common sense to put themselves into the position of their patients, residents, service users and who know what magic ingredient will give them the best chance to thrive.

This didn’t happen for Riya who suffered a life-threatening stroke but didn’t speak or understand English. She spent almost a month in a specialist hospital with just a single video call to her family ‘allowed’ each day. The staff said she responded to ‘commands’ and that, if they needed any information, they’d get an interpreter. Her family said that they believed she would do better if they could speak to her, touch her, interpret for her, help her eat. It took four weeks of argument and a chief nurse’s intervention before their view prevailed. What a waste of recovery time.

The system didn’t work for Daniel who was living with early onset dementia. He was taken into a specialist mental hospital. His wife, Emma, writes; “They told me he was constantly looking for me. He became very agitated and aggressive with staff resulting in him spending over 100 hours in a seclusion room on 11 occasions. He developed covid, cellulitis in his legs, wouldn’t sleep in his bed, had seizure, allergic reactions, 2 bad falls to his head. Resulting in 4 trips to A&E. When he left to go into a nursing home in May he was doubly incontinent, couldn’t feed himself, lost his speech, and bent forward and poor mobility and required 24 hour 1 to 1 care. At a best interest meeting I was denied the right to bring him home.”

When I ‘met’ Emma, Daniel was back in an acute hospital, refusing to eat. It had reached the point that tube feeding was preferred to the assistance of his wife. Again, there had to be a row and a director of nursing intervened. Emma was allowed in and Daniel survived.

Should the system have the right to
separate a married couple without their consent?

When Betty came out of hospital a period of care home rehabilitation was advised before she returned home with additional support in place. No one told her or Rosemary, her friend and companion, who held power of attorney, that this would mean 14 days in isolation. Neither Betty nor Rosemary consented. Visits were ½ hour a week.  In the name of infection control Betty was confined to a to a small single room, denied company, stimulation or exercise. Her special diet was not offered until 10 days had passed. After 18 days she was dead. She died alone.  

Tom is 33 but his condition means he now has the capacity of a 2-year-old. He wears nappies, crawls and cannot speak. When he is put into isolation, because someone has tested positive in his care home, he is shut in his padded room or strapped into his wheelchair. His mother is only allowed to look through the window. After a change in government guidance last summer, Tom is allowed to come home once a week, subject to negative testing. When it is time for him to go back, he bites his arm to indicate his distress. His mother writes: “Putting your family member into the hands of a care home you can trust is one thing, but if you have serious concerns about the home, it is unbearable […] This is why it is essential that family and friends must be allowed to see their mothers, fathers, sisters, brothers and to get up close and personal as much as possible.”

Nicci Gerrard and I, from Johns Campaign, will be with Helen Wildbore from the Relatives and Residents Association, Diane Mayhew and Jenny Morrison from Rights for Residents. 50 MPs from all parties have accepted their constituents’ invitations to come and listen to our ‘witnesses’ – people who have experienced these cruel – and counter-productive – separations. Other MPs and charities have voiced their support. Will it make a difference?

So often, over the past two years, I have thought of Philip Pullman’s vision of the irreversible damage done when humans and their daemons are separated by the General Oblation Board. But you don’t have to have read His Dark Materials to understand why this practice must be outlawed and the inalienable right to #care support enshrined in law that everyone can understand. You only have to read the stories above or look into your own heart.

But if you want a book recommendation - I'm currently reading Wendy Mitchell's What I Wish People Know About Dementia - and Wendy's coming with us