We are delighted that we have engaged the support of John Bercow, Shadow Secretary of State for International Development, who was touched by Ali's story and the plight of families who have lost children to this dreadful disease. His support kicked
off with the first ever debate on childhood brain tumours in the House of Commons on 26th April 2004, in which he raised the issues and suggested the establishment of a screening programme.
Support is being sought from other all party MP's across the UK.
26th April 2004 - An adjournment debate on the issues faced by the brain tumour community
Together with fellow UK Brain Tumour charities, Ali's Dream seeks to raise public awareness, and increase funding to provide:
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Education for GP's and to establish a screening programme
- There are over 120 different types of Brain Tumours which present themselves in different ways. (Symptoms source - Cancer Research UK website)
- Headaches - often severe and persistent
- Convulsions (fits or seizures - particularly over 40's)
- Vomiting and / or nausea
- Changes (often subtle) in personality, memory or mental ability
- Blurred or double vision
- Weakness, often one sided in the arms or legs, stumbling or lack of co-ordination
- Impaired memory
- Slurring of speech or difficulty speaking
- Problems with smelling and hearing
- Inability of eyes to gaze upwards
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These symptoms are often the same as those for other illnesses and diseases
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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 act on instinct
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Referrals for MRI scans can take weeks and in some cases years whilst GP's either do not recognise the symptoms or choose to eliminate other causes first
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GP's and other professionals such as: nurses, junior doctors, receptionists, therapists and opticians need information to be widely available and to receive training regarding the differing symptoms of the various tumours
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A screening programmer for individuals that present with such symptoms should be more readily available, so that treatment can start earlier rather than later and in many cases too late
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Information for patients and carers
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Specialised professional support particularly adult and paediatric neuro-oncology nurses
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In the UK there are only 17 Locations with the facilities to treat Brain Tumour patients - there is no representation in Wales. Eight of the Children's cancer hospitals do not have the facilities to treat brain tumour patients
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Specialised and dedicated professional support for Brain Tumour Patients across all the disciplines is not guaranteed in all locations. There is inconsistency across centres with facilities for brain tumour patients in terms of the care that they can
provide
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Each hospital that treats brain tumour patients should have a Multi-Disciplinary Team approach - speech therapists, occupational therapists, epilepsy nurses, physiotherapists, nutritionists, social workers, neurologists, oncologists, neuro-surgeons and
neuro-oncology nurse specialists should work as a team
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Each hospital that treats brain tumour patients should have at least one dedicated adult and one dedicated paediatric Neuro-Oncology Nurse Specialist as well as:
- Specialised therapy equipment in hospitals and at home
- Specialised counselling
- Nght sitters and respite care
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Radiotherapy is not available at all centres and there is often an 8 to 12 week delay before treatment, which often comes too late. What's more, during this waiting period, no other treatment such as drug therapies are offered
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Patients undergo incessant waiting periods, waiting for results, waiting for surgery, waiting for treatment to start. Clinicians are stretched and see brain tumour patients on certain days of the week as they focus on other conditions on the other days
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There is a need for more specialist adult and paediatric neuro-oncology nurses in local communities and those that are available are often funded by charities.
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Children need specialist paediatric neuro-oncology nurse specialists, most paediatric hospitals have a paediatric oncology nurse that is stretched looking after all childhood cancer patients. In Scotland and Wales there are no paediatric neuro-oncology
nurse specialists - despite rising figures, and the fact that brain tumours are now the most common solid tumour in children
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There is a need to train professionals about respect, dignity and compassion.
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Support for patients and carers, emotional, physical and financial
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Dedicated neuro-oncology nurses are in short supply and do not have the time to set up much needed support groups for patients and families to offer counselling and help. They rely on patients, carers and charities to set these up
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There are support groups available but these have often been set up in isolation, are not readily available and communicated and are inconsistent in the support they can provide
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Families who are bereaved should have freely available bereavement support
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Carers, most often family members of patients who survive a brain tumour, often need to give up work to provide full time care, which can go on for years
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In a perfect world it would be wonderful to meet all the needs and expectations of the patients and their carers, to see a day when patients were treated with a whole care package in place, rather than having to source social workers, benefits information
and support.
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Patients and carers need access to psychologists, psychiatrists and professionals who will support the whole family through the transition from surgery, recovery and acceptance!
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Funding is desperately needed for families who have to travel miles for treatment and often need to pay for accommodation, as well as hidden costs such as: parental leave, new clothes for children on steroids whose clothes no longer fit, treating patients
and siblings to special holidays to ease the pain and create special memories, expensive hospital food, moisturisers and sun screens etc.
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Research into discovering the causes, advancing treatments and finding a cure
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Indeed pressure on University Funding has resulted in the recent loss of the research centre at Kings College London
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Clinical trials are undertaken in only half of the Brain Tumour Hospitals Birmingham, Edinburgh, Glasgow, Preston, Royal Marsden, Sheffield, Queen Square, London, St Thomas's, London
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Scientists and clinicians rely on rallying the support of patients and families to set up charities and trusts in order to raise much needed funds for research
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In some cases clinicians and scientists are working in isolation, resulting in a duplication of research activities. An integrated programme of research needs to be adopted, with the establishment of dedicated brain tumour research centres, focusing
on particular fields such as:
- Types of tumours e.g. medullablastomas, astrocytomas
- Genetics & molecular genetics
- Brain tumour invasion
- Treatments e.g. chemotherapy sensitivity and getting drugs through the brain barrier
- Results of research activities are not widely distributed and shared to help people make informed choices: particularly regarding information on potential causes of brain tumours, including the safe use of mobile phones and risks, the potential links
with viruses and use of aspartame in widely used products.
- Not all clinicians and scientists are pro-active in keeping up to date with latest trends. The best in the field align themselves to the British Neuro-oncology Society and the European Association for Neuro-oncology. This takes time out of their day
but they must keep themselves up to date with fast moving global initiatives.
- Research results should be published and shared across all research centres, dedicated professionals and the general public
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Ethical legislation is burdensome and the demands are in many ways overkill - form filing is both distressing to patients and frustrating to researchers.
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Patients / parents have to sign consent forms at every step of the way - consent to operate, consent for pathological diagnosis, consent for tissues to be used for research - this is distressing
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Scientists have to rely on patients to give consent in order to obtain much needed tissue for research and have to complete three lots of forms for every patient and every experiment for the local ethics committees - getting in the way of progress
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