Welcome to BTA
HappyĀ New Year
Grand Christmas Raffle
Our Christmas Raffle was a great success due to all the generous individuals who gave their time and money to promote it so enthusiastically. The total raised in three weeks was Ā£1285.26p. Thank you so much to all those who sold and bought tickets. Special thanks to Janice McClure for organising it all so efficiently. The lucky prize winners, drawn from an antique jam pan – see photograph – were:
J. Hannon, Anne Patterson, Tim Slack, Heather Cooper, Audrey Stevenson, Lynne Philip and Gordon Moggach. Congratulations to them all.
- Julie Read and Janice McClure drawing the winning tickets, 13thDecember 2011.
Beautiful calendars still available
Our best-known booklet
Our New Edition
Our best-known booklet, the twenty-four page āLiving with a Brain Tumourā has just been updated and reissued. āLiving with a Brain Tumourā is the most often requested of our publications and is now in its third edition. Among other topics it discusses the impact of diagnosis, physical and emotional responses, stress, coping strategies, tumour types and symptoms and treatments. Please let us know if you would like a copy. It is also available to read or download from our website. See Living with a Brain Tumour
What we have been doing with Your Help
Brain Tumour Action has been able, thanks to your generous support, to make two significant donations during 2011.
The first is a donation to the Edinburgh Centre for Neuro-Oncology which has launched an Appeal to raise funds for the purchase of an intra-operative ultrasound system to assist in brain surgery.
We have also provided funds to support research at the University of Portsmouth in liaison with Brain Tumour Research.
As well as backing research at hospitals within the UK we continue with the main work of our charity: supporting individuals through our telephone Helpline, now in its ninth year of continuous service, through email correspondence, distributing our range of ten information pamphlets including the well-knownā Living with a Brain Tumourā and contributing to awareness-raising across the country in partnership with many other brain tumour charities. We also host the longest, continuously-running support group in the UK, provide set-up grants to newly-established support groups and fund aromatherapy for patients in Scotland.
Brain Tumour Action, unlike many other charities, is a voluntary organisation without paid employees.
With your continuing support we can do even more to help those affected by this debilitating disease.
Royal College of Nursing Focus Group
The Royal College of Nursing would like to invite you to attend a short focus group to share your views and opinions about the care you have received from clinical nurse specialists or nurse consultants (and also to share your ideas about the best ways of assessing or measuring nurse performance).
The College is keen to obtain the views of patients whose experiences fit the following three simple criteria:
- They have accessed specialist or advanced nursing care.
- They have done so within the last twelve months.
- In any of the following 21 health-related issues or disease-specific treatments:
Asthma; Hospice Services; Cancer; Leg Ulcer Services; Continence Care; Palliative Care Services; Dementia; Rehabilitation Services; Dermatology; Respiratory Diseases; Diabetes; Rheumatology; District Nursing Team; Sexual health Services; Family Planning Services; Stroke; Gastroenterology; Tissue Viability Services; General practice; Urology; Heart Disease.
The focus group will take place in:
- London (address to be shortly confirmed).
- March 2011 (date to be confirmed)
- And will last no longer than 2 hours.
If you would like to attend you should contact Mehreen Chandan at the Royal College of Nursing.
Contact details:
Tel: 020-7647-3649
E-mail: mehreen.chandan@rcn.org.uk
A Patient Information Navigation Study in Edinburgh
Sarah Scott, Sarah Shepherd and Belinda Hacking of theĀ Edinburgh Cancer Centre are offering guidance to newly diagnosed patientsĀ on their treatment choices using an information program, supported by a CD, developed by Dr Jeffrey Belkora of the University of California in San Francisco.
The Patient Information Navigation (PIN) program aims first to encourage patients to plan ahead for their consultation and feel confident about asking the questions they want the answers to and second to help patients feel informed and certain about the decisions made regarding their health care. People newly-diagnosed with a brain tumour attending the Edinburgh Centre for Neuro-oncology (ECNO)Ā will be invited to take part in the study. The PIN program consists of three parts: a list of questions prepared before the clinic appointment(consultation), consultation audio-recording and consultation summarising. Patients meet with a āPatient Information Navigatorā (a member of staff trained to deliver PIN) prior to four key doctor appointments at the ECNO clinicā initial appointment, treatment planning appointment, treatment review appointment, and follow up appointment.
The question list is created using the SCOPED model (see box 1).
Box 1. The SCOPED Model
SCOPED encourages patients to think about questions regarding:
Their Situation
Treatment Choices
Personal Objectives
Key People involved in their care
Evaluating risks and benefits of treatment
Deciding which treatment is best/to proceed with the recommended treatment.
Patients will create their list of questions with the navigator. This list will then be given to the patientās doctor for them to review before the appointment. The navigator will go together with the patient to the appointment and audio-record the consultation while noting down the key points. The patient will take away with them a CD of the consultation on the day and will be sent a typed summary of what was discussed which will be copied to the hospital consultant. This summary can also be sent to the patientās GP within two working days. This means that the GP is kept up to date with the patientās hospital care.
This study will be working with those affected by brain tumours after two focus groups were conducted which showed a need for support at consultations. These focus groups highlighted the following concerns:
- asking questions could be frightening and difficult, not knowing what to ask the doctor until after the consultations.
- it was frustrating to have to start from the beginning with each new doctor seen; there is a need for more awareness about brain tumours in general practice.
The navigation program was initially trialled with newly-diagnosed breast and prostate cancer patients from 2009-2010. Patients who took part felt that their doctor was prepared for them personally. They also recognised a change in their own behaviour: āI asked questions that I wouldnāt have thought about, instead of just going in and saying āthat will be fineā and not really bothering.ā The personalised information that patients received reassured them about their treatment choice: āThey gave me lots of percentages and things like that which I felt was a bit much to take in, but on listening to [the CD], it does sound like itās going to be beneficial.ā
Previous results suggest this program enables patients to engage effectively in consultations, resulting in greater satisfaction with the decisions made.
The new study will run from January 2011 to February 2012 in the ECNO clinic and is also being offered to patients newly-diagnosed with colorectal cancer during the same time period.
This study is funded by Macmillan Cancer Support and the Edinburgh Cancer Centre, in collaboration with Coventry University. If you would like more information please do not hesitate to contact the study Evaluator, Sarah Shepherd, on 0131 537 1247 or the Navigator, Sarah Scott, on 0131 537 3742.
The Brain Tumour Manifesto
Brain Tumour Action is a member of Brain Tumour Research, an umbrella organization for eighteen UK brain tumour charities. Brain Tumour Research along with Brain Tumour UK, The International Brain Tumour Alliance and The Samantha Dickson Brain Tumour Trust have launched a manifesto which calls on the Government to work in partnership with the brain tumour charities to:
- Ensure early diagnosis and treatment for everyone affected by a brain tumour;
- Implement the best practice guidance for treating people with the disease;
- Significantly increase Government investment in brain tumour research.
The manifesto sets out practical solutions to be monitored, to measure improvements towards the lives of everyone affected by a brain tumour.
The manifesto was presented to the All Party Parliamentary Group on Brain Tumours in October. The manifesto may be viewed at Manifesto.
