Former Bromley teacher with Addison's disease raising awareness of the benefits of cortisol pumps and the NHS 'postcode lottery'
Published: 06:00, 25 February 2020
A woman with an incurable disease says the NHS can be "a postcode lottery" and it will take someone to die before anything is done about it.
Sally Schofield, a former Bromley teacher, suffers from Addison's and has had to shell out £6,000 on treatment because it is not available in her area.
To do this she has sold her car, jewellery, household possessions, and relied on donations to buy a cortisol pump, which she says dramatically improves her quality of life.
The NHS says it won't fund the device - despite patients in other parts of the country patients being given the treatment.
Ironically, her GP says the pump could potentially save the health service thousands of pounds because Mrs Schofield wouldn't have to call an ambulance, stay in hospital, or use other medical services.
The device she has bought works similar to an insulin pump - delivering cortisol when needed to treat her life-threatening condition, but it costs £200 a month to maintain.
Mrs Schofield said: "My worry is it'll take somebody to die before somebody does something about this and then it will be too late. I don't want that person to be me."
While head of art at Ravens Wood School, she was diagnosed with the disease and prescribed tablets.
She was regularly ill and having episodes in which her heart rate would drop and her body would begin to stop functioning, which eventually led her to retire in 2018.
Symptoms include fatigue, low mood, loss of appetite, and constant thirst.
Doctors later found the tablets she was taking were not being processed by her stomach and were actually making her more ill.
Mrs Schofield then decided to start experimenting with the paid-for pump, which mimics the pituitary gland that plays a major role in regulating the body's vital functions.
She believes the pump is a better form of treatment and should be available on the NHS, adding: "I've never been healthier than since I was diagnosed.
"I've lost my steroid weight and I'm out of hospital.
"My GP said it saves thousands of pounds because I don't have to call an ambulance, stay in hospital or use NHS services."
Within just two days of using the pump, she was able to get out of bed without feeling sick, which would have been impossible before.
It also stopped the frequent fainting and helped her sleep better and take less painkillers.
The NHS says it won't fund the pump as it is too expensive, is experimental, and does not meet medical guidelines.
However, pumps have been provided on the NHS in areas such as Dorset, Bath, Cornwall and Liverpool.
The 50-year-old said: "They've been given the pump because their endocrinologist has been brave enough and kind enough to to allow it.
"However, the running costs are ongoing and they're massive for me. I'm having to pay £200 a month. It's not fair."
She added: "It's nuts. I've sold my car, I sold my sauce pans, I'm selling my jewellery.
"I'm selling everything I can in order to pay for the equipment that is essentially saving my life every month."
Mrs Schofield has contacted her MP, local GP, the East Surrey Clinical Commissioning Group, and health secretary Matt Hancock asking for help but says she "has gone round in circles".
She said: "There's no trust. This is my body. I know how I feel. They don't believe me.
"I will shout this from the top of the trees until I don't have a breath in my body."
A spokesman for the East Surrey CCG said: "This is not a licensed medicine. Unlicensed use becomes necessary if the clinical need cannot be met by licensed medicines and such use should be supported by evidence and experience."
Mrs Schofield and her husband, Steve, have raised almost £4,500 of their £7,000 target.
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Sophie Bird