| UBTC - Brain Tumour Patients Go Unrecognised – 14 th March 2005
A survey conducted by the Brain and Spine foundation with the support of United Brain Tumour Campaign and other brain tumour charities revealed that many brain tumour patients wait over 24 weeks to be referred to a specialist.
What’s more majority of patients were not given contact details of a health professional nor a brain tumour charity or other support organisation that they could contact for information and support.
Indeed brain tumour patients and carers expressed dissatisfaction with the follow-up and long-term support they receive, particularly at diagnosis and with the help they receive in dealing with the long term effects of a brain tumour.
United Brain Tumour Campaign charities seek to raise public awareness of brain tumours, and increase funding to provide:
- Education for GPs and to establish clearer referral guidelines
- Information for patients and carers
- Support for patients and carers, emotional, physical and financial
- Specialised professional support particularly adult and paediatric neuro-oncology nurses
- Research into discovering the causes, advancing treatments and finding a cure
Contacts
Survey: Brain and Spine Foundation: Sharon Swain – 020 7793 5900
United Brain Tumour Campaign:
- Sue Farrington Smith, Ali’s Dream – 01296 730230 (day)
- Sharon Swain, Brain & Spine Foundation – 020 7793 5900
- David Brandon, Brain Tumour Action – 01506 436164
- Tina Mitchell , Hammer Out – 01454 414355
The full Press Release and analysis can be found here
UBTC - A Parliamentary Leap Forward - 26 th October 2004
Sixteen all Party MP’s and four members of the House of Lords joined United Brain Tumour Campaign Charities for a reception at the House of Commons on Tuesday 26th October.
To add weight to their arguments the charities were joined by neuro-scientist Dr Tracy Warr, neuro-surgeon Kevin O’Neill, neuro-oncologists Dr David Walker and Catherine Brock and Antonia Lawton a neuro-nurse specialist who all took the opportunity to get their points of view across.
Earlier diagnosis and earlier treatment of Brain Tumours is just one of the areas that the charities are seeking to address and was the theme of the reception.
There are over 120 different types of Brain Tumours which present themselves in different ways. With this diverse range of symptoms, diagnosis can take weeks and possibly months causing undue stress on the patient and their family and friends and delaying the necessary treatment.
Poor diagnosis due to its apparent low incidence is often only achieved as a result of persistence from patients, their families and children’s parents who are acting on instinct. Patients undergo incessant waiting periods, waiting for results, waiting for surgery, waiting for treatment to start.
John Bercow (Con), MP for Buckingham, Bob Blizzard (Lab) MP for Waveney and Steve Webb (LD) MP for Northavon invited their colleagues on behalf of the charities. John Bercow has committed to form an All Party Parliamentary Group to take this forward.
Sue Farrington Smith trustee of Ali’s Dream said “This was an amazing opportunity for us to raise the profile of the issues surrounding the Brain Tumour Community. We were overwhelmed at the level of interest and support we received and cannot thank John Bercow, Bob Blizzard and Steve Webb enough. The promise of further action being taken will really help us make a difference and brings us ever closer to realising our dream”
Hammer Out - Brain Tumour Research Could Extend Survival
Researchers at Frenchay Hospital are studying new ways in which the most effective chemotherapy treatment could be given to the patients most likely to benefit. The latest technology is being used to analyse brain tumours and identify which people are most susceptible to chemotherapy. If successful, these malignant tumours could be targeted immediately with a combination of chemotherapy drugs which can shrink the tumours, improve quality of life and prolong survival.
North Bristol NHS Trust has secured a £12,000 donation from the local ‘Hammer Out’ brain tumour charity to continue with the project. The funding will provide DNA extraction kits and other materials for analysing around 250 brain biopsies and blood samples a year from consenting patients, for the next three years. Staff are working to discover better ways of spotting tumours where missing chromosomes leave the disease more vulnerable to particular chemotherapies. The focus will be on primary brain tumours – those which arise within the brain rather than those that have spread to the brain from elsewhere in the body. Around 5,000 new cases of primary brain tumour occur in the UK each year.
Professor Seth Love, of the Directorate of Neurosciences at Frenchay Hospital, is confident the tests will eventually help to prolong patient survival. He said: “The results of our research will be of huge importance to both patients and the staff who manage their care.”
Tina Mitchell, Chairman of Hammer Out, said: “We are delighted to be able to help continue the valuable research being carried out at Frenchay Hospital as the programme we are funding will help to guide the treatment of present and future patients. We hope that in some small way our passion for brain tumour research and commitment to the hospital will help to push those boundaries and we are extremely proud to be associated with this vital work.”
Brain & Spine Foundation - Headstrong Launch at Science Museum
Celebrities, healthcare professionals and medical charities united with children and their families to help launch Headstrong – the Brain and Spine Foundation’s brand new resource for children with brain tumours. Headstrong comprises a ring-bound folder for children aged seven to nine years old, a magazine-style publication for those aged 10-12, CD Rom and a website.
Headstrong is the product of three years of consultation with an exceptional group of individuals and organisations. They include children with brain tumours, their parents, Great Ormond Street Hospital, paediatric oncologists, neuroscience nurses, neuro-psychologists, oncology and radiotherapy play specialists, experts in children’s welfare issues, children’s writers and graphic designers.
The Brain and Spine Foundation’s collaboration with children to develop material for their own age group has not been done before in this area of health information provision. The project has therefore become a model of good practice, having addressed the practical and ethical issues of the involvement of children, for other organisations to use when developing material that helps children actively participate in the management of their illness.
Ellie Savage Memorial Trust - MP Raises Early Day Motion – July 2004
Bob Blizzard MP for Waveney added his support to the cause by tabling an EDM to draw attention to the issues for childhood brain tumours, and to elicit support for it by inviting other Members to add their signatures to the motion: “That this House pays tribute to the valuable work carried out by UK charities which focus on the problem of children's brain tumour; and believes that the NHS should work in partnership with these charities to provide better information and support for patients and carers, more education for general practitioners, an increase in specialist paediatric neuro-oncology nurses and a programme of research to study the causes, advance treatments and discover a cure for children's brain tumour.” Within a week 68 MP's had added their signatures to Bob's and by the end of July there were over 100 signatures.
In June, Bob accompanied Wendy Savage for a meeting with the local Primary Care Trust, to explore opportunities to work together. Wendy says: ‘The support we are getting from Bob Blizzard MP for Waveney is tremendous, we had a very successful and positive meeting with Andy Evans Chief Executive of Waveney Primary Care Trust, and along with fellow charities are putting steps in place to continue our awareness campaign and make a difference”
Ellie Savage Memorial Trust – First Research Project - July 2004
Ellie's Trust announced on Thursday at a press conference in the National Neurological Hospital that they have launched their first brain tumour research project. The project is being led by Professor John Darling and intends to develop a new way of attacking and killing the tumour cells in the most aggressive form of brain tumour - glioblastoma multiforme - which is the same type of tumour that Ellie had.
Ali's Dream Commits £200,000 for Childhood Brain Tumour Research – June 2004
The charity Ali's Dream which raises funds for childhood brain tumour research has committed to spend a further £200,000 over the next three years and have invited scientists and clinicians to provide 250 word extract applications by the end of July.
From theses applications they will select projects which will go to a full description application to be completed in the autumn – this takes scientists several days to complete. In November, their paediatric focused scientific and medical advisory board will review the applications and recommend which project(s) they should fund. Ali's Dream Scientific and Medical Advisory Board is chaired by Professor Geoffrey Pilkington, University of Portsmouth and includes:
• Dr Anthony Michelski, Consultant Paediatric Oncologist, Great Ormond Street Hospital
• Mr Dominic Thompson, Consultant Paediatric Neurosurgeon, Great Ormond Street Hospital
• Dr Frank Saran Consultant Paediatric Oncologist, Royal Marsden Hospital , Surrey , and
• Dr Paul Scotting , Genetics, Paediatric Brain Tumour Centre, Queens Medical Centre, Nottingham
Ali's Dream is already funding a project led by Dr Tracy Warr , which was started in October 2003.
There are numerous forms of brain tumours and each type of tumour behaves in a different way. The types of tumour children develop are different and they behave differently to those seen in adults and some are much more difficult (or even impossible) to cure.
Research is in its infancy, with very little known about the behaviour of brain tumours, and this needs to be understood before significant progress can be made into treatments and finding a cure.
The most common form of brain tumour found in children is a type known as astrocytoma, although many of these tumours are found to be benign, approximately 20% will be malignant. The chances of long term survival are poor especially for astocytomas of the pons where less than 10% of children are still alive two years from diagnosis.
House of Commons – Adjournment Debate – 26 th April 2004
Focusing on Childhood Brain Tumours John Bercow MP for Buckingham, support ed by Bob Blizzard MP for Waveney and Bob Spinks MP for Castle Point, raised the issues of the Brain Tumour community in an adjournment debate at close of the Parliamentary Day on Monday 26 th April 2004 .
“…I put it to the House that the issue of children with brain tumours is under- debated, under-reported and under-funded.
…Members of all political parties and of none, and parents, patients and professionals, look to the Government to give a lead and to make the fight against brain tumours a key priority. I look forward to the contributions that other hon. Members will doubtless make to the debate. I look forward, in particular, with interest, courtesy and respect to the response of the Minister and to the policy of the Government. I think that I can confidently say that tens of thousands across the country will do so too…”
The responding Minister, Dr Stephen Ladyman - The Parliamentary Under-Secretary of State for Health admitted the comparatively low attention that brain tumours had received in the past and committed to giving the subject more attention in the future:
“…I had not realised that Parliament had so little considered these matters until the hon. Member for Buckingham (Mr. Bercow) spoke, and I hope that opportunities can be found further to debate them in coming months because they clearly need to be explored. We need to work together on initiatives to move forward.
…I will ensure that officials study the guidelines to see whether they offer any encouragement for the sort of situation that the hon. Gentleman described, by helping GPs to spot such conditions and refer them for specialist advice more quickly.
…I hope that, when the national service framework for children is published, we shall have another opportunity to debate these matters in much greater detail and that, in particular, we shall be able to look at that document to see what benefits it could bring to the children who have been mentioned in tonight's debate.
… Once again, I should like to thank the hon. Member for Buckingham for securing this debate, and my hon. Friend the Member for Waveney and the hon. Member for Castle Point for their valuable contributions. I look forward to having further opportunities to debate this matter in the future.”
John Bercow takes the lead for Ali's Dream - April 2004 Buckingham's MP - John Bercow, Shadow Secretary of State for International Development touched by the plight of families who have lost children to a Brain Tumour, has successfully applied for an adjournment debate to raise the issues of the Brain Tumour Community and to seek to establish a screening programme. The debate is being held on 26 th April 2004 .
Sue Farrington Smith – trustee of Ali's Dream first saw John at his January surgery to enlist his support for the charity that is raising funds to find a cure for childhood brain tumours, which is now overtaking leukaemia as the number one killer of children in the UK , after accidents. Sue and her fellow trustees are delighted that he should show such sympathy for the cause, and were impressed at how quickly he responded.
In the past two weeks Ali's Dream have rallied the support of UK Brain Tumour charities up and down the country to visit and write to MP's in their region, the response has been overwhelming. Over 400 MP's will receive a pack which highlights the issues.
MP's Rachel Squire, Bob Blizzard, and Steve Webb, who have been visited by trustees of fellow charities, Brain Tumour Action ( Scotland ), Hammerout ( Bristol ) and the Ellie Savage Memorial Trust ( East Anglia ), have committed to take action and be there to support John.
The debate will take place at close of session, on Monday April 26 th , likely 10pm and will be covered live on satellites' Parliament TV.
Sue Farrington Smith says “We are delighted that John is taking the lead in this and the support that this important debate is receiving up and down the country. The ball is now rolling and momentum is gathering, our Ali's Dream of finding a cure for Childhood Brain Tumours gets closer all the time”
Brain Tumour Awareness Month – March 2004
The first joint brain tumour awareness month was a huge success, with over £10,000 being raised between the eight charities involved.
There was a tremendous buzz amongst the organisers who shared news throughout the month and were even more motivated to know that activities were going on all over the country as well. The most significant achievement was the amount of individuals who now know about Brain Tumours and didn't before! What's more we know there will be considerable spin offs in the future as new found support ers come on board.
Local radio and press ran articles and covered events and celebrity support ers got involved.
On 8th March the BBC televised a documentary of an operation performed on a Brain Tumour patient, following this several families contacted the Brain Tumour Foundation and were provided with information and support . GMTV contacted Brainwaves for an interview.
Events included:
• 51 mile sponsored tandem bike ride through Suffolk
• 67 mile cycle ride from Harewood House to Scarborough
• RAF cycle race in Aberdeen
• Sponsored bike ride from Bristol to Bath
• Word-search competition for all middle schools in Suffolk and Norfolk in conjunction with Ottakers Book Store – Lowestoft
• Balloon release at Leeds infant school
• 47 shops in Buckingham ran events and displayed posters
• Charity Dinner and Cabaret in Preston
• Charity Luncheon in Nottingham
• Card and craft sale at Lees General Infirmary
• Coffee Mornings and dress down days across the regions
• Sponsored slims were held in Edinburgh , Epsom, Falkirk , London and Middlesborough
The Brain and Spine Foundation launched their Headstrong project designed to support children of 7-12 and their families and carers.
Eight charities Unite to Fight the Cause for Brain Tumours - March 2004
Eight charities have joined forces to launch a Brain Tumour awareness month in March. The charities have one vision: to provide information and support for the brain tumour community and to fund research into establishing the causes, advancing treatments and finding a cure.
Brought together by their shared experiences, the charities, Ali's Dream (Northern Home Counties), Andrea's Gift (Yorkshire), Brain and Spine Foundation (National), Brain Tumour Action (Scotland), Brain Tumour Foundation (Derbyshire & London), Brainwaves (Northern Ireland), Ellie Savage Memorial Trust (East Anglia) and Hammer Out (South West) are organising fundraising activities up and down the country, engaging their local press and radio stations to promote awareness.
John Bercow Shadow Secretary of State for International Development touched by the plight of families who have lost children to this dreadful disease, has committed to stage a debate in the House of Commons to raise the issues and seek to establish a screening programme. Support is being sought from other all party MP's across the UK .
16,000 people a year are diagnosed with a brain tumour, 6,400 (40%) of which are primary tumours originating in the brain while the remaining are secondary tumours which have spread to the brain from primary tumours at other sites of the body. Indeed around 25% of all cancers spread to the brain.
The prognosis for children diagnosed with a brain tumour is poor, with only 20% surviving beyond five years. Adults and children who do survive are left with side effects which affect them for the rest of their lives.
Families and friends who lose a loved one are never the same again.
The apparent low incidence means the brain tumour community are poorly support ed and funding for support and research is largely dependent on charities.
There are over 120 different types of Brain Tumours which present themselves in different ways. With this diverse range of symptoms, diagnosis can take weeks and possibly months causing undue stress on the patient and their family and friends and delaying the necessary treatment.
Once diagnosed, it is difficult to find information and discover the options available. There is also a lack of specialised support in the medical and caring professions. What's more at a time when quality of life becomes uppermost in a families mind, the financial resources to go on special holidays or simply pay the burden of increased insurances such an illness attracts, adds further stress.
The charities seek to raise public awareness, and increase funding to provide:
• Education for GP's and to establish a screening programme
• Information for patients and carers
• Specialised professional support particularly adult and paediatric neuro-oncology nurses
• Support for patients and carers, emotional, physical and financial
• Research into discovering the causes, advancing treatments and finding a cure
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