Brainwaves NI continues to build local and national alliances. By working in partnership, Brainwaves NI are more effective in:
– Raising awareness of the needs of those diagnosed or living with a brain tumour, and their families and carers.
– Lobbying locally and nationally on behalf of those affected by a brain tumour.
– Supporting local & national campaigns with implications for those affected by a brain tumour.
– Raising funds for vital research.
Making a national difference:
Brain Tumour Manifesto
Brainwaves NI were part of the Brain Tumour Manifesto coalition which set out to produce a Manifesto for everyone affected by a Brain Tumour. Utilising our long established alliances and links with other brain tumour organisations and charities, we contributed to and helped shape this crucial manifesto. It was launched at the House of Commons and presented to James Arbuthnot MP, head of the All Party Parliamentary Group for Brain Tumours. To read the Manifesto in full, please click here
Saatchi Medical Innovation Bill
Research discoveries are wasted if they cannot be implemented!
The Medical Innovation Bill will help doctors to innovate new treatments and cures safely and responsibly for cancer and other diseases. This proposed bill will change the law to allow pioneering treatments to be available for patients. Right now, the government is deciding whether to pass a new law, the Medical Innovation Bill commonly known as the ‘Saatchi Bill’ that will help doctors to find new treatments safely and responsibly for cancer and other diseases.
The current law makes it hard for doctors to try new treatments – even when they know that standard procedures are not going to cure the patient. Offering only the standard procedure guarantees the doctor will not be sued. Safely trying something new leaves the doctor open to litigation and the loss of his or her job. This is why the current law is a barrier to innovation – it creates a culture of defensive medicine in the NHS. The Medical Innovation Bill will remove this barrier and help doctors innovate safely on behalf of their patients.
Brainwaves NI actively supported this bill during its public consultation period, we signed the petition supporting this bill and shared the petition through our website and social media accounts, asking our followers to consider doing the same. We realise it is not just brain tumour patients who will benefit, all cancer and rare disease patients will benefit from this bill.
“The Bill seeks to support doctors who endeavour to act in the best interest of their patients without the fear from litigation. It deters from irresponsible experimentation but encourages a much needed attitude change of innovation in the provision of care to cancer patients.” Professor Ahmed Ashour Ahmed, Professor of Gynaecological Oncology, Consultant Gynaecological Oncology Surgeon and Scientist, University of Oxford
“The Saatchi Bill will allow responsible innovation.” Sir Michael Rawlins, President of the Royal Society of Medicine
“Protect the patient. Nurture the innovator.” Professor Norman Williams, President of the Royal College of Surgeons
Get the facts here
To keep up-to-date with progress here
Making a local difference:
Equal Access NI campaign
There are nearly 40 cancer and vital life-extending drugs some of which are researched, designed, developed, tested and trialled at QUB Centre for Cancer Research and Cell Biology that are NOT available to local NI cancer patients.
This issue was originally brought to attention by local cancer campaigners and from the beginning, we supported their campaign particularly through social media, where we shared their urgent message to help bring wider local attention to such a crucial and shocking issue.
It’s a travesty that people in Northern Ireland are fundraising to support local & national research but not getting the benefit of it.
This is particularly highlighted by the case of local cancer campaigner Una Crudden who is battling ovarian cancer, she is denied ovarian cancer drug Avastin because it is only available to NHS patients in England even though the drug is being advanced and trialled by Queens University Belfast CCRCB.
Even more shocking is the fact the Una took part in the CCRCB trial but is now denied it on the NHS.
Read more about this story here: http://www.bbc.co.uk/news/uk-northern-ireland-27877636
Avastin is a drug which has recently been trialled in the USA for Glioblastoma Multiforme, so is of interest to brain tumour patients waiting to see if it offers tangible hope for treatment.
Whilst this may not affect you today – it could affect you, your family and friends tomorrow!
This is why we have continued to support everyone trying to bring wider local attention to this life-threatening issue.
The campaign was then taken up by Cancer Focus NI in partnership with the Daily Mirror. All local cancer charities have supported it and we actively encouraged our followers to support it too.
To support this campaign: http://icampaigner.org/join/equalaccess
To read Press Release: Open
To follow updates on this issue: Read now
Campaign against cuts to RVH specialist neurology beds
Brainwaves NI campaigned against the sudden closure of 25% of Royal Victoria Hospital Specialist Neurology beds in September 2010
We supported the call for a debate & a Motion to be brought to the Stormont Assembly. We encouraged our members, their families, friends & carers to write to their MLAs to ensure that every constituency had a say in the debate. We provided pre-written letter templates and links to the Assembly contact list.
On the 29th November 2010 the Motion was heard in the Assembly and received cross party support. Following the debate in Stormont, the Minister was asked to review the decision in January 2011
Learn more about our Regional alliances.