Families across the country are launching online fundraising appeals to help them access drugs, procedures and therapies, in some cases costing tens of thousands of pounds.
Online platform GoFundMe said there was a 29 per cent increase in medical fundraising on the site between January and March this year, compared to the same point last year.
A spokeswoman said: “It’s difficult to accurately pin down how many of those are for treatment either not yet or no longer funded on the NHS, but a keyword search suggests a seven per cent rise which would reflect our experience in talking to campaign organisers.”
Last year, it was also reported that JustGiving, another platform, saw a seven-fold increase in the number of appeals - more than 2,300 - set up for people with cancer to pay for treatments not available on the NHS in 2016, compared to the previous year.
In the week of the health service’s 70th anniversary, charities have raised fears that people could be leaving themselves vulnerable to unsafe or unproven options and are calling for greater research and quicker access to emerging treatments.
Staci Liversedge, a volunteer committee member for the Hull and District Cerebral Palsy Society, said: “There is a risk that people are trying to raise money for treatment that may not even be beneficial to them. It may work for some people and there may be success stories but it can instil unrealistic optimism which then, if the outcome is not achieved, can be disappointing."
Cost effectiveness is considered by the National Institute for Health and Care Excellence, which assesses drugs and procedures, in deciding which treatments should and shouldn’t be funded by the NHS. It also looks at evidence of clinical benefits.
A spokesman from Neuroblastoma UK said sometimes new treatments, being trialled abroad but not in the UK, showed promise. He said: “As the trials overseas charge for treatment, families are required to crowdfund to cover the costs. The solution would be for the UK to undertake more research.”
Nic Bungay, director of campaigns at Muscular Dystrophy UK, added: “There are some treatments that have not been approved and have not gone through rigorous clinical testing, and we don’t know if they are safe. We continue to push for quicker access to emerging treatments in the hope one day no lives will be needlessly cut short, and everyone can access treatments proven to be safe and effective.”
The latest report on Prescribing Costs from NHS Digital showed overall the basic cost of medicines to the NHS in England in 2016/17, before VAT and any discounts, was Â£17.4bn, an increase of 3.5 per cent on the previous year and up 33.7 per cent from the Â£13bn total in 2010/11.
Analysis by The King’s Fund in April found medicine costs grew on average around five per cent per year, but the NHS budget rose by just 1.5 per cent.
It said it was becoming harder for the NHS to balance giving patients prompt access to effective treatments, ensuring expenditure on medicines is affordable and incentivising the pharmaceutical sector to develop new products.