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Battling the system...while fighting a terminal illness

6 minute read
Battling the system...while fighting a terminal illness

Published by the Eagle Radio News Team at 6:00am 3rd August 2017. (Updated at 6:18am 3rd August 2017)

"Why should we have to jump through hoops to prove how ill we are..."

That from a woman from Camberley woman who is suffering from a terminal illness.

60 year old Claire Brown has Motor Neurone Disease.

The former teacher is backing a letter sent to the Health Secretary and South West Surrey MP, Jeremy Hunt, by 19 neurologists.

They are appealing for his intervention, saying all MND patients should have better access to support.

According to the Motor Neurone Disease Association, MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.

It attacks the nerves that control movement so muscles no longer work.  

It can leave people locked in a failing body, unable to move, talk and eventually breathe.

More than 80% will experience communication difficulties before they die - some will lose their voice completely.

At this stage of the disease, Claire needs round-the-clock care to help her dress, bathe and eat.

But she said when she applied to have her Continuing Healthcare (CHC) funding renewed, in February this year, she was told after a review that she might no longer eligible. 

She said after another review, which took place in May, it was then confirmed she would, after all, have her funding renewed.

In the meanwhile, she said, she suffered weeks of worry while she waited to hear of the decision by Surrey Downs Clinical Commissioning Group.


According to the Motor Neurone Disease Association, only 30% of people with MND currently receive CHC and a further 33% are not aware of it or know that they may be entitled to it.

Claire first experienced early signs of MND in 2009. She was finally diagnosed in 2014 and given a life expectancy of around 14 months.

She was referred to Phyllis Tuckwell Hospice in Farnham, who helped arrange her at-home care.

She said she spent a lot of money on her house, funding most of the changes herself. But she said it soon became clear she would need support from carers - and applied for CHC.

For two years running, she was successful in her applications for the funding, but in the third year (2017), after a review in February, she was told she may no longer be eligible.

She said nothing had changed - she said her health had not improved, in fact it had worsened: "I was really quite ill and exhausted with infections and initially didn't have the energy to fight the decision but with the support of my care team we requested a review."

After the second review in May it was confirmed she would have her funding renewed. But she said she feels she should not have had to go through weeks of worry in the meantime: "I am furious that I had to go through so much upset and red tape.

"I can still speak out, just! But I worry for those who can't do that - what happens to them? Fighting MND is one thing, but having worked and paid high tax rates all our lives my family just can't understand how I can be treated like this. 

"People with a terminal condition should not have to jump through these hoops to 'prove' how ill they are time and time again.

"It causes so much unneccessary worry for people who are often in a very vulnerable position.

"Delays will mean they might not receive vital support to help try to maintain some sort of quality of life. 

"If you are fighting MND, the last thing you need is to be fighting the system which is meant to support you too."

Surrey Downs CCG has confirmed Claire had a review on February 21 2017. It said "this indicated the need for a more comprehensive assessment" - which was undertaken on May 3 2017 - after which it was confirmed Claire remained eligible to receive CHC funding.

The CCG said  funding was not withdrawn at any stage - but it admitted there was a communication error on their part.

They said it is their understanding there was "some confusion and following a conversation with a member of the team, Mrs Brown may have been advised after the February assessment that she may not be eligible in future.

"However, the CCG wrote to confirm that funding would continue and at no point was it stopped."

Surrey Downs CCG spokesperson Eileen Clark, Acting Director of Clinical Performance and Delivery and Chief Nurse at Surrey Downs Clinical Commissioning Group, said what happened to Claire was due to an "administration error."

She reiterated at no time was funding withdrawn - and she said the CCG is very sorry for the mistake and any distress it caused.

In a statement she said: "If someone has complicated, and ongoing health needs, they may be eligible for NHS continuing healthcare. In these situations, we would work with the individual and their family, to consider applications against the national framework and understand if they are eligible. 

“This process involves assessing the individual’s healthcare needs and considering these against the nationally set criteria. We work with healthcare providers, people involved in their care and family members to get all the information we need to fully understand the type of care and support that an individual needs.

“If someone is receiving continuing healthcare, in line with national guidance, we review their health needs at least every twelve months to see if anything has changed, and to make sure they are getting the right support.

“Our continuing healthcare team strive to provide the best possible service to clients but on this occasion we believe that, following a review, due to an administration error, Mrs Brown was incorrectly informed that she may no longer be eligible for continuing healthcare. This error was realised and at no time was funding withdrawn.

“We are very sorry for this mistake and, more importantly, for any distress caused to Mrs Brown and her family. We are always looking to improve the service we provide and we are currently reviewing our processes, which includes how we communicate with clients, so we will make sure we learn from this.

“As a service, we will continue to support Mrs Brown and her family to make sure she gets the support she needs.”  

The letter signed by 19 neorologists to Jeremy Hunt says CHC funding is a "vital source of support for people with the most severe health-related care needs to go on living a full life and maintain their independence and wellbeing for as long as possible."

The signatories are asking to meet with Mr Hunt to discuss the issues and their concerns.


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