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Former nurse is forced to sell her home after forking out £100,000 on treatment abroad because of NHS shortfalls
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12 May 2008
Joan Botten, 64, spent £70,000 having two pacemakers fitted in Monaco to avoid the seven-month wait at her local hospital.
She then forked out £20,000 for two courses of revolutionary stem cell treatment in Germany which has dramatically improved her health but is not approved for use in Britain.
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Cash-strapped: Joan Botten and her husband Mike are having to sell their home because she has had to fork out £100,00 on medical treatment abroad because of shortfalls in the NHS
Now she is being forced to sell her £235,000 home for a third course of the treatment after her local PCT turned down her latest plea for funding.
Doctors say the treatment is her only hope as current UK-approved drugs can only "maintain" the decline in her health, but not improve it.
Grandmother Joan, from Witham, Essex, an NHS nurse for over 18 years, said: "I feel like I've been abandoned. It's the equivalent of telling me to go away and die.
"I've spent my life caring for others and working for the NHS - but when I need them they're not there for me. It makes me wonder why I did it."
Joan, who has three grandchildren and another one due in June, suffers from chronic heart failure as a result of having rheumatic fever as a child which damaged her heart valves.
She had her first heart attack in 2000, forcing her to leave her job as a manager of a residential care home. She had another heart attack in 2001.
Joan has since had two operations to have pacemakers fitted - both done in the tax haven of Monaco because the couple feared that any delay could prove fatal.
Her husband Mike, 65, a retired residential care home manager, said: "We couldn't take the risk that Joan wouldn't survive the wait. In relation to Joan's life, or quality of life, savings meant nothing."
Joan's cardiologist, Dr Delphine Turner of the Broomfield Hospital, Chelmsford, Essex, suggested stem cell therapy and has helped the Bottens plead their case for funding from the PCT.
The therapy involves taking stem cells from bone marrow in the hip, selecting the cells they need then passing them by catheter into the heart. The cells then grown back into the muscle wall and blood vessels, assisting the heart.
The treatment is not yet approved in the UK because it is considered too experimental, although St Bart's Hospital, London, has been running trials since 2003.
Joan underwent her first round of treatment at the Johann Goethe Institute in Frankfurt in early 2005. She paid £7,800 but the true cost was nearer £10,000 with expenses.
Before the procedure her heart was functioning at 16.5 per cent but this rose to 30 per cent afterwards.
She then had a second round of treatment in 2007 costing another £10,000, which lifted her heart function to 40 per cent.
Joan said: "The results from the previous sessions were brilliant and without the treatment I don't think I would be here. It makes the heart work much more efficiently.
"Before the first treatment I was housebound and couldn't do anything, but afterwards I felt fine. I had another round of treatment and again there was an improvement.
"I have a very good GP and cardiologist who supported my application, but the PCT says it does not meet their criteria.
"They have said it is an experimental treatment, but it is carried out in many countries.
"I know it is not a cure, but it does give me a lease of life and has already kept me going for three years."
Joan suffered a third heart attack five months ago and has now booked in for another £10,000 round of stem cell treatment on May 20.
But Mid Essex Primary Care Trust turned down her request for funding because it views the treatment as a "trial" and can find "no other exceptional or extenuating circumstances to consider".
Joan and Mike have now exhausted all their savings and have put their three-bed detached £235,000 home on the market - and fear they'll be forced to dramatically drop the price to get a quick sale.
To save enough cash to keep Joan alive they plan to build a £60,000 annex on their 37-year-old daughter's home - although planning permission is yet to be granted.
In total the couple have already shelled out a whopping £90,000 on foreign health care.
A spokesman for Mid Essex Primary Care Trust said: "We have arrangements in place to consider individual requests for treatments which fall outside of our normal commissioning policy.
"The decision which the panel makes is based on this evidence taken alongside other guidelines, which include a PCT policy not to fund clinical trials.
"In this case, the panel viewed the treatment as a trial and finding no other exceptional or extenuating circumstances to consider, felt there were substantial reasons to turn down the request for funding."
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