Families should have 24/7 access to people with dementia in hospital to keep them 'anchored to the world' they love

MPs have given their backing to John’s Campaign to make it an ‘inalienable right’ for families to stay with people with dementia when they are in hospital.

John’s Campaign was set up by Nicci Gerrard and Julia Jones to call for families and carers of people with dementia to be allowed to remain with them in hospital for as many hours of the day and night as necessary.

Since launching it late last year, the campaign has quickly gathered momentum garnering support from the likes of MPs Diane Abbott and Keith Vaz.

Early Day Motion

MP Valerie Vaz has tabled an Early Day Motion calling for the Government to ‘support the same rights for families and carers of dementia sufferers as parents of sick children and allow for family representatives to stay with the patients at any time of the day as dementia sufferers can struggle to understand and communicate with strangers in unusual surroundings’.

Nicci Gerrard decided to set up the campaign, after her father, Dr John Gerrard who had Alzheimer’s, died in November last year. He went into hospital in February 2014, for five weeks, to be treated for infected leg ulcers and by the time he was discharged, he came out “skeletal, incontinent, immobile and incoherent, requiring 24-hour care”.

“He went in strong, mobile and able to tell stories about his past” and then during his time in hospital he “deteriorated drastically”.

Prior to this he was “strong, mobile, healthy, continent, reasonably articulate, cheerful and able to lead a fulfilled daily life with my mother”, says Ms Gerrard.

In the past, children used to go into hospital without their parents but now Ms Gerrard says this is “unimaginable” and the current NHS advice to parents is clear: ‘Stay with your child as much as you can.’

People with dementia can be as distressed and disorientated as a child

“People with dementia aren’t children. They are adults with a lifetime’s experience. Their needs are more complex, yet they’re not entirely dissimilar. They’re vulnerable and can be as distressed and disoriented as a child.”

She believes that a hospital stay can be catastrophic for a person with dementia and she and her family feel certain that he would not have deteriorated to such an extent if they had been allowed access to him in the ward for longer.

Ms Gerrard set up with the campaign with Julia Jones, whose mother has Alzheimer’s.

She revealed that when John’s Campaign started snowballing, “we realised, then, that poor dear John Gerrard wasn't just Nicci's dad and a warm, friendly, reliable and caring human being, he was a statistic. His story was the story of so many others.

“Research had shown that it is people like him (and my own mother and Sally Magnusson's mother and thousands more) who are managing to achieve some quality of life, despite the ravages of dementia, who are the people most at risk of collapse if that structure of care is kicked away by a hospital admission.

“Especially if their family support is unnecessarily curtailed by locked ward doors and strict adherence to visiting hours.”

Hospitals with 24/7 access are the minority

She admits there are good hospitals with open access policies but sadly they are still the minority.

Yet it is vital for people with dementia. Ms Jones says: “Now I have learned to understand the stress and anxiety that my mother feels (living with dementia) that I don't let her go to the hairdresser unsupported.

“An unexpected visit from a chiropodist when she was on her own, recently, felt like a violation. She was bewildered, upset, angry. “So, why on earth would I agree to leave her in the alien atmosphere of a hospital to have needles stuck into her and drugs offered by strangers? A place where she will need to remember that she has to press some little button if she wants to go to the lavatory.

“A place where her bedroom is public and all her familiar possessions and pictures are gone. A place where she isn't even allowed a bunch of flowers for fear of lurking bacteria. A place where her family and friends are only 'allowed' to visit her between 1-3pm!”

Support for the campaign has grown quickly

Fortunately, the campaigners have found understanding and support have come from all sides.

John’s Campaign has won the backing of health minister Norman Lamb, who has said he will write to all NHS trusts championing the idea, while the shadow health secretary, Andy Burnham, has agreed to strengthen the NHS constitution and include it in Labour’s election manifesto.

On 11 March on NHS Change Day, the NHS England Patient Experience team did a social media Thunderclap for John’s Campaign.

A number of NHS trusts have also agreed to implementing the changes within their own hospitals and making staff aware of the new measures. However John’s Campaign wants to see the policy adopted in every hospital in the land and there is still a long way to go.

For more information on John’s Campaign on how you can help go to http://www.johnscampaign.org.uk/howyoucanhelp.html

Currently there is an Early Day Motion in Parliament which MPs can sign if they support the campaign.

This is the reference http://www.parliament.uk/edm/2014-15/586