‘I don’t want to break my promise to my dying husband’

Jan 21 2008 by Wendy Horton, South Wales Echo

WHEN GP Siaron West told her terminally-ill husband Pete he could die in his own home, she meant every word of it.

But now, the dedicated 36-year-old doctor could be forced to break that promise.

The care package which allows her to look after him at home could be taken away – and Pete, who suffers from multiple sclerosis could be forced into a care home.

Pete was diagnosed with MS just two months after the couple’s wedding.

Since then, Siaron has been caring for him, as she juggles her job and bringing up their seven-year-old daughter Catrin.

So far, Siaron has coped thanks to a care package made up from social services and the Government’s Independent Living Fund.

The package has meant Siaron has been able to tend to her husband’s medical needs and is supported by hand-picked carers, who look after her husband and provide short respite care.

Although the package has worked well over the past six years, Siaron has now been told by Cardiff council’s social services department that the source of funding could alter.

If that happens, Pete, who is currently bedridden, could end up in a nursing home.

And it’s a terrifying thought for the 35-year-old, who is a university graduate with a science degree.

Pete cannot speak but he can understand what’s going on and communicates through a computerised aid.

Just recently he spent three days spelling out the words: “I am really frightened.”

Siaron has spent months arguing with social services and complaining to an independent body over funding issues – but the uphill struggle has taken its toll.

“It’s been a really, really difficult time,” she said.

“I am the person who fights Pete’s battles and he has trusted me because I have promised to keep him at home until he dies.

“But I have had to sit him down and say ‘I’m really sorry Pete, I may not be able to win this battle’.

“I feel as if I am up against people who are too big to fight.”

Siaron has lost one-and-a-half stone from her already tiny frame. And her daughter Catrin, who was conceived by a sperm donor, has spent the past three months suffering nightmares.

“Catrin has told me she is frightened that social workers are going to take her daddy away.

“She is in my bed and having nightmares most nights.

“Her behaviour has been very, very different as she is picking up on the stress and the uncertainty of it all. One of the worst times for us was just before Christmas when Pete was very ill.

“What I didn’t want was for the last three months of his life to have been spent in fear, living with a wife who was so stressed out.”

Siaron, who works flexible hours at Trethomas Surgery, near Caerphilly, has spent the past year fighting plans by social services to alter Pete’s care package so that it is paid for by the NHS.

If this happens, Siaron claims it would mean cutting back on Pete’s care so that he may only get district nurses calling at the family home in Heath, Cardiff, a few times a day.

Siaron said: “If the care package is changed it would mean the carers Pete has known over the last six years would be replaced with district nurses who would just come in and dress and undress him and call to check three times a day.

“Pete needs round-the-clock care – his carers are his arms and legs. He cannot even use a TV remote control.

“Our carers know Pete, they know when to scratch his head, they know when to wipe his face.

“He’s deteriorated so badly now that even I have to work hard to know if he is nodding yes or no.”

Over the past few months Siaron has refused social services’ request to assess Pete in the hope that stalling would delay the process until the inevitable happens.

This week Siaron was given some hope after a report by an independent body, to which she complained, recommended Pete be assessed by an outside organisation rather than social services.

However, it seems unlikely that Cardiff council will back down because of legalities.

Although it couldn’t comment on the specifics of the case due to it being on-going, the council issued this statement: “Although we sympathise with the situation the council has to work within the legal framework and within guidance issued by the Welsh Assembly Government,” it read.

“Health services and social care services are funded separately to meet different kinds of needs.

“It would be unlawful for the council to continue to fund a service for someone whose needs meet the continuing health care criteria.

“This has been confirmed by the High Court.

“Nor can the Independent Living Fund (ILF) continue to support someone meeting the continuing health care criteria.

“Cardiff council believes in providing flexible social care services that are designed to meet specific care needs of individuals.

“There are many examples in Cardiff of care arrangements where health and social care professionals work together, each meeting needs within their spheres of expertise and responsibility.

“We are obviously very keen to resolve this matter in consultation with Dr West and all relevant agencies.”

Siaron’s heartbreaking fight for Pete to die at home is to be featured on BBC Radio Wales’ programme Eye on Wales next Monday, at 6.30pm.

wendy.horton@mediawales.co.uk