The government must act to improve the human rights of dementia patients and carers

Few now question the right of parents to stay with children in hospital - so why don't patients with dementia have similar rights? A blog for Dementia Awareness week.

Julia Jones
22 May 2015

At least a third of hospital beds are now occupied by people with dementia – up from a quarter of beds six years ago, according to figures from the Alzheimer’s Society.   

John's Campaign is single-issue and simple. It is for the right of carers to stay with people with dementia if they are admitted to hospital. It is named for the father of my friend, the writer Nicci Gerrard, whose father’s dementia was catastrophically accelerated by a stay in hospital where he was largely cut off from his family.

In the 1960s we had to campaign for parents to have the right to stay with their children in hospital. Few question this right now. So why does the same right not apply to carers of people with dementia?

Currently, patients with dementia – usually admitted for unrelated conditions – have worse outcomes than similar patients who do not have dementia, according to the Alzheimers Society

They suffer acutely from fear, disorientation and stress. Their levels of nutrition and hydration are poor. Their mobility and continence suffers, they are at extra risk of delirium and falls. They need almost constant reassurance and practical help.

Ideally, more people with dementia would be treated at home – surrounded by people, and in an environment, they trust and recognise. But the reduced number of district nurses, the appalling lack of dementia specialist nurses (Admiral Nurses) working in the community and shortages of GPs to do home visits make good quality care at home hard to achieve.

So we have to improve the experience of people with dementia in hospitals. And progress has been far too slow.

So where are we, post-election?

Thanks to Valerie Vaz MP and Shadow Secretary of State for Health, Andy Burnham, Labour’s election manifesto pledged to incorporate this right into the NHS Constitution – something we will continue to campaign for.

In the last weeks of the last government Norman Lamb (Lib Dem Junior Health Minister) and dementia 'tsar' Alistair Burns wrote jointly to the Chief Executives of all acute hospital trusts in England, asking them to facilitate carers' wish to stay outside of regular visiting hours and overnight if necessary.

We hope that this letter will be acted on and receive the publicity it deserves – but there needs to be a stronger requirement – a right.

Despite a friendly and encouraging letter from David Cameron, who has taken a personal interest in dementia strategy since 2010 – current government policy is that 'visiting hours are a matter for individual hospitals to decide' –which leaves us needing to persuade hospital by hospital across the country that carers are different from visitors and that access should be granted as a right. Not only as a right for the carers but as a right for the patient. We have found ourselves rephrasing our central demand – switching the right of carers to stay with people with dementia to the right of people with dementia to have their carers with them if they are admitted to hospital.

Sarah-Jane Marsh, CEO of Birmingham Children's Hospital, commented that she saw 'no reason at all' why the approach they adopt towards involving families could not work equally well in adult hospitals.

Some hospital trusts are already beginning to change their practices. Both Bristol University and North Bristol Hospital Trusts have welcomed carers of people with any degree of dependency throughout their hospital system for the past five years. The Heart of England Trust in Birmingham recently took the decision to scrap visiting hours entirely – for everyone, not only carers.  A greater number of trusts or even individual wards find ways to differentiate carers from the generality of visitors (for example Imperial College Healthcare Trust has adopted ‘Carers Passports’). This then allows them to offer carers access at whatever time may be most helpful, including overnight. Imperial are also putting 'Carers Welcome' posters on all their ward doors to ram the message home. Other trusts are making similar decisions: Kingston, UCL, Royal Free in London, Trafford Hospital in Manchester, Brighton and Sussex University Hospital, the Countess of Chester Hospital, Basildon Hospital, Cheltenham and Gloucester. Then there are individual centres of excellence such as Professor Rowan Harwood's Medical and Mental Unit in Nottingham University Hospital Trust and Dr David Oliver's ward in the Royal Berkshire Hospital.

Pledges of support have come from the British Geriatric Society, the Alzheimers Society, Dementia UK, the Gold Standards Framework (end-of-life care), and Carers UK. Most recently Parkinsons UK publicly stated their support, seeing John’s Campaign as a way of helping their Get-It-On-Time initiative.

It does seem astonishing that we need a group like Parkinsons UK to campaign to ensure medicines are given at the right times during a hospital admission.

But our campaign has as one of our two guiding principles, that this will never be a campaign that blames individual nurses. The problem is huge, complex hospitals, and staffing levels stretched to breaking point.

Our campaign is not about getting nursing care on the cheap - nor an alternative to all the other improvements that are needed to make hospitals more dementia-friendly environments.

But we need to recognise that in today’s overstretched hospitals, nurses are simply not able to cope with the degree of nurture needed by someone with dementia as well as providing the essential professional nursing.

Our second key principle is that there will never be emotional pressure on carers. We want the right to stay with our loved ones in hospital, not the duty.

A few have suggested that carers should be allowed to ‘leave it to the nurses’ as they need respite from often 24/7 care. And indeed they should. But true ‘respite’ care is best offered when carers know that the person they care for is reasonably contented and secure, not when they are ill and at their most needy.

Of course, not all patients will have carers able to assist. But that is no reason not to accept help from those who are able and willing. Wards where carers are welcome confirm that their presence has the potential to improve the experience for all.

We have met with understanding and support from nurses at all levels. The Royal College of Nursing were quick to offer encouragement. England's Chief Nursing Officer, Jane Cummings, is currently promoting John's Campaign. Earlier this month I was invited to talk to a group of newly recruited Health Care Assistants in Essex who were giving the campaign their own equally enthusiastic support.

Andy Tysoe, a dementia nurse, described carers as the 'cognitive ramp' for his patients – like a guide dog, a hearing aid, a crutch or an interpreter.

Looked at from this perspective John's Campaign becomes an issue of equality, of disability discrimination, of mental capacity and informed consent. Suddenly it is something much too important to be left to a couple of middle-aged women and their kindly well-wishers. Despite the inestimable support we have received within six months, John's Campaign will only succeed if it effects a complete culture change. If it becomes the norm to ensure that vulnerable patients whose well-being and ability to function depends on others are never unnecessarily deprived of that support. This is something that should concern us all: I believe it is an issue of human rights. 

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