Cancer mum's postcode lottery hell
A MUM who has had an agonising wait to be diagnosed with a rare form of cancer is still waiting to find out if she will have the go-ahead for life-changing treatment because she lives in Wales.
Lian Gittus fears she could be the victim of a postcode lottery over her care and said she was told by a specialist that if she lived in England she would be able to go to America to have proton therapy.
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Lian Gittus, who has a rare form of cancer and needs treatment in the USA
The treatment is such a precise form of radiotherapy it can target the cancer down to a hair's breadth. It could also allow the 33-year-old, of Godre'rgraig, to go back to living her life.
But now Mrs Gittus faces undergoing receptor medicated radiotherapy (RMRT) which she said she has been told was a less effective form of treatment.
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A Welsh Health Specialised Services Committee spokesman said proton beam therapy for Welsh residents is commissioned on a very limited basis.
Mrs Gittus, who was diagnosed with Ewing's sarcoma last autumn, said: "I believe if I lived in England the specialist would send me for proton therapy in America, but because I live in Wales there may not be funding to send people abroad for treatment.
"It's like a postcode lottery.
"In England they have a fund for 40 patients to go to America to have proton therapy."
She added: "I have a rare form of cancer on the spine and I have gone from walking and being fit and active as a PCSO (police community support officer) to being hardly able to walk.
"The tumour was so bad that I became incontinent for a while.
"If I have an operation it could leave me paralysed and on crutches for the rest of my life — my choice would be to have proton therapy. I want to go back and live a normal life."
She revealed she would have to raise between £75,000 and £100,000 if she had to pay for the US-based treatment herself and would have to do so in the space of the next three to four weeks.
Mrs Gittus said funding would also be needed to cover the cost of her former bomb disposal expert and former BT worker husband Jason, 38, travelling to America with her.
It was around Christmas 2010 that she first started to suffer pain in her right leg and she said she was originally given painkillers for a pulled muscle.
Following a series of MRI scans she was asked to return to the hospital last July. She said it was only then she was told that there was a tumour on her spine.
She said: "The tumour has grown so big it's grown out of the bone and it growing on the outside."
A Welsh Health Specialised Services Committee spokesman said: "The Welsh Health Specialised Services Committee (WHSSC) does not comment on individual patient cases. We are, however, happy to discuss any issues patients or their next of kin may have directly with them.
"Proton beam therapy for Welsh residents is currently commissioned on a very limited basis from a small number of providers outside the UK.
"All potential cases are assessed by the UK clinical advisory panel for proton beam therapy, which then makes recommendations for treatment. All recommendations must be approved by WHSSC on an individual basis."
A spokeswoman for ABMU health board said: "We were contacted yesterday by the Evening Post and asked for a response within a few hours. This did not allow us sufficient time to attempt to gain consent from the patient to discuss her case, or to contact the clinicians involved in her care to gather the details needed to respond. However, we can confirm that we have received a claim from the patient and we are looking into it."
28 Comments
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by jellytussle
Monday, February 18 2013, 1:52PM
“"... "I believe if I lived in England the specialist would send me for proton therapy in America..."
This comment demonstrates a basic misunderstanding of the process for accessing proton therapy for UK citizens on the NHS.
There is a single UK-wide panel which assesses cases for proton therapy in the USA. In this sense it is different from the regional variations in provision/funding of cancer drugs etc (aka postcode lottery.) For protons,there should be no difference in terms of access for the devolved nations compared to England.
It is true that there is funding for a limited number of cases per year to receive proton therapy overseas, but that is a separate argument.”
by sancho-panza
Thursday, February 14 2013, 6:07PM
“Reading this sad story, several things occur to me, including the following:
1. Lian has a rare kind of tumour needing needing expensive treatment from a specialist machine. Wales with its population of 3 to 4 million has a smaller health budget than larger countries and will not be able to buy such machines in the foreseeable future. So Welsh patients will always have to go abroad for such treatments.
2. £100 000 may sound like a lot of money but the alternative treatment being offered is pretty crude, and collateral damage to nervous tissue would be likely to render her partially or totally paralysed. How much more expensive would it be in the long run to have a doubly incontinent and/or paralysed person, unable to work, and requiring care for the rest of her life? (And that does not address the personal cost to her in terms of loss of quality of life, to say nothing of the burden on her family.)
3. In Wales, the NHS spends £1 500 000 PER WEEK treating the diseases arising from alcohol abuse (according to a study done by Swansea University for the Welsh Assembly). Lian needs one tenth of one week's cost to have treatment for a disease that has hit her out of the blue.
4. None of us know what's coming round the corner. This really is a case of there but for the grace of God goes any one of us. Let Lian have the treatment we would want for ourselves or for someone we love. And fast. With cancer, treating the disease quickly is essential, and Lian has already been kept waiting 2 years.”
by weslangdon
Thursday, February 14 2013, 9:37AM
“There are insufficient facts with this story; no details of this woman's treatment so far, what has been achieved, and what are her expectations of a full recovery or even a reasonable recovery. Has she had the tumour removed, is it a type likely to metastasize or of a type that might re-grow in situ, is she under going chemotherapy at present. What is without doubt is that the SWEP wishes to make political capital over this woman's predicament. Remember this newspaper group supports the Tories, supports cuts to ALL public services, and hates the NHS.
http://tinyurl.com/77bhvod”
by Jiffy
Thursday, February 14 2013, 7:19AM
“"Sorry Neathboy234 I cannot agree with your comments that admin. costs would far outweigh revenue raised"
Have you got a bank account, sent a solicitors letter? Many licences from tv to fishing are sold over the Interweb because they save administration costs that way.
Get your head out of the sand.”
by Jiffy
Thursday, February 14 2013, 7:15AM
“This whole story is based on one statement -
"... "I believe if I lived in England the specialist would send me for proton therapy in America..."
As we know there IS a NHS postcode lottery in England. Even if Lian Gittus liven in England, there is no certainty that she would get treatment in America.
Then, who knows if this hugely expensive treatment would be successful? We have all seen appeals to send children to the US for some extreme treatment that costs megabucks - and all too often these 'treatments' are quackery that totally fail to succeed.”
by MAD666
Wednesday, February 13 2013, 10:42PM
“Sorry Neathboy234 I cannot agree with your comments that admin. costs would far outweigh revenue raised. What evidence do you have to support this? The Welsh NHS has lost millions over the years in lost revenue because of free prescriptions for all, and will continue to do so whilst free prescriptions are in place. Of course there are certain sections of society that will continue to get free prescriptions, and if they are eligible then so they should. However, the majority of people would pay for them, and £1 per prescription would raise a lot of money, and is affordable, and very fair.
Free prescriptions for all was a nice idea I agree, but it was ill thought out. Common sense has to prevail here.”
by Neathboy234
Wednesday, February 13 2013, 9:01PM
“You can get free NHS prescriptions if, at the time the prescription is dispensed, you:
are 60 or over
are under 16
are 16-18 and in full-time education
are pregnant or have had a baby in the previous 12 months and have a valid maternity exemption certificate (MatEx)
have a specified medical condition and have a valid medical exemption certificate (MedEx)
have a continuing physical disability that prevents you from going out without help from another person and have a valid MedEx
hold a valid war pension exemption certificate and the prescription is for your accepted disability
are an NHS inpatient
You are also entitled to free prescriptions if you or your partner (including civil partners) are named on, or are entitled to, an NHS tax credit exemption certificate or a valid HC2 certificate (full help with health costs), or you receive either:
Income Support
Income-based Jobseeker's Allowance
Income-related Employment and Support Allowance, or
Pension Credit Guarantee Credit
Find out more about the NHS Low Income Scheme (LIS).”
by Neathboy234
Wednesday, February 13 2013, 9:01PM
“MAD666 Fact is very few people pay for prescriptions in England. And if we had a fee on £1 it would cost more in admin costs that would be raised.”
by MAD666
Wednesday, February 13 2013, 7:06PM
“It seems that a United Kingdom we are NOT. Wales is now part of UK in name only. There should be no difference in the treatment of cancer anywhere in the UK. This is just one area that is unacceptable. What exactly has the Welsh Assembly Government really achieved with the NHS? Just look at all the hospitals that are underfunded and understaffed. Overworked staff are undervalued and at breaking point in nearly every area of the NHS in Wales. What qualifications and experience in this field do the people running the Welsh NHS have? Are they trying to run it as a business or as a service? Please note National Health SERVICE! We are lagging behind even some countries that had been considered third world. This should never been allowed to happen. My heart goes out to Lian Gittus, as no-one should find themselves in such a situation. Just think though it could be any one of us facing a post code lottery for treatment if we were unfortunate to be diagnosed with Cancer. The treatment is available and Lian should be allowed the treatment. How many of us give to Cancer Research I wonder? It is wrong then that we are denied the treatment where the research may have helped to be funded by our own donations. As for free prescriptions, Wales can no longer afford such a luxury. Everyone could afford £1 per prescription. This would generate a huge amount of revenue for the NHS in Wales. The Welsh Assembly Government and the UK Government need to stop playing politics and playing with people's lives and start governing effectively. It beggars belief that so much money can be given in aid to overseas, and yet we can't even look after our own citizens.”
by GorsseinonJoe
Wednesday, February 13 2013, 5:25PM
“I sympathise with Lian but unfortunately this has everything to do with politics. In England patients get a choice in Wales we get what we are given.
Spend the money more wisely and more cost efficiently and the NHS in Wales may one day deliver a service for the patient rather than some ideology being held by those in power.”