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If only brain tumour research could be funded in the same way as leukaemia and other cancers

Response to NHS England Consultation on Closing Treatment Centres

Brain Tumour Research has responded to NHS England’s consultation on the Stereotactic Radiosurgery and Radiotherapy Services review, stressing that any decision made needs to promote the welfare of patients and increase access to the best available treatments.

In November NHS England opened the consultation for responses to plans to close 19 of the 25 centres that offered specialised treatments for brain tumour patients. The treatments currently available in these centres are the gold standard stereotactic radiosurgery and radiotherapy services, which use exact beams of radiation to kill both cancerous and non-cancerous tumours in the head and thus removing the need for surgery in many cases.

The treatment is currently available in 25 centres across the country, ranging from the Freeman Hospital in the North East to University Hospitals Bristol in the South West, but patients receiving these treatments could now face unprecedented traveling to attend appointments for life saving treatments. The rationale behind the proposed changes is the need to improve the efficiency of a service and seems to have forgotten about the thousands of new people diagnosed every year with a brain tumour in the reorganisation of care.

The plans included provisions to provide treatment 7 days a week, a move that would be extremely welcome. It would increase the numbers of patients able to receive treatment and add allow more flexibility and choice for patients. Despite this, we have compelled NHS England to reconsider their proposals and ensure that the treatment that patients need is available to all at a reasonable distance of travel. The disease and the treatment often have debilitating effects on the patients and place families and friends caring for patients under extreme stress. Travelling to and from treatment is a considerable but necessary burden and should not be made any more difficult for patients than it already is. There is a significant coalition of patients, clinicians and Parliamentarians who have raised their concerns and we hope that NHS England take on board these views and rethink proposals that will not in any way benefit patients.

7 Responses to Response to NHS England Consultation on Closing Treatment Centres

  1. Kerri Parker says:

    As a brain tumour patient and spokes person for Brain Tumour Research this is disgusting! Mum had to drive for 4 hours for my local treatment centre which I consider local still, ALL brain tumour patients lose their driving license and so rely on someone to take them there and back.

    With all the stress of the treatment and what patients go through, long distance travel is not always an option.

    The NHS need to prioritise all cancer patients not just the more favourable ones – we do not get to chose which one we suffer from!

  2. Jayne Hilsdon says:

    My wonderful son was diagnosed with a very aggressive brain tumour in December. This is so wrong something must be done. To be diagnosed with something so awful and to go through treatment is enough to have to deal with. Big rethink needed!

  3. Linda Rickford says:

    This would be taking a real step backwards for brain tumour patients. Having to travel further for treatments would simply add to the levels of fatigue and stress already felt. We are already the poor relation when it comes to funding, research and support…please don’t make it harder than it already is?

  4. Nat Mitchell says:

    It’s a struggle to drive as far as we do for our brain surgeon and hospital in Bristol. When your world falls apart and your child is diagnosed with a brain tumour just breathing becomes hard, added to this is the fact that you are separated from your family and community. Kids need their loved ones around them to get better, our families drove the 2 hour journey to be with us. Please don’t take this option away from us or families like us.

  5. Lorraine Scott says:

    this is an absolute disgrace. My husband suffered for 3 years with a brain tumour and spent a lot of time travelling backwards and forwards to hospital. His licence was taken away and i took time off work to take him to his appointments and we did a 30 mile round trip 5 days a week for 6 weeks initially without even thinking about all the other trips we had to make on a regular basis. The cost of this was ridiculous, considering we only had one wage coming in. The treatment made him unwell and very tired and this was not helped by all the traipsing about. I can’t imagine how much more difficult this would have been if we had to travel further. The people who make these decisions should be made to escort a brain tumour patient to and from hospital every day for 6 weeks and see what this does to the patient and their family. It’s hard enough to get the treatment they need as it only gets 1% of the cancer spend as it is. Brain tumours kill more people under 40 than any other cancer and are the biggest childhood cancer killer. Shame on you

  6. My daughter was diagnosed with a brain tumour in August 2014.She has had 3 surgeries since that time to this and is now undergoing a 6 week course of daily radiotherapy.we travel a round trip of approx 100miles per day. By the time the treatment has ended we will have travelled in excess of 3,000miles that does not include travelling to and from outpatient clinics or for inpatient surgeries.

  7. Max Doble says:

    The rationale to these closures is that survival rates are so poor for Brain tumours, that
    money could be better spent elsewhere.
    This ignores the fact other cancers get far more funding, and the treatment of sufferers is already poor. Lung cancer, often precipitated by smoking is routinely funded better.
    If cuts have to be made to the treatment of brain cancer then that saving should be set aside for research.

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