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.

Christmas Raffle Draw 2011
Julie Read and Janice McClure drawing the winning tickets, 13thDecember 2011.

Beautiful calendars still available

The Herald supports BTA

Our best-known booklet

New Booklet

Our New Edition

Our best-known booklet, the twenty-four page ā€˜Living with a Brain Tumour’ has just been updated and reissued. ā€˜Living with a Brain Tumour’ 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-known’ Living with a Brain Tumour’ 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 ā€˜Patient Information Navigator’ (a member of staff trained to deliver PIN) prior to four key doctor appointments at the ECNO clinic– 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 patient’s 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 patient’s GP within two working days. This means that the GP is kept up to date with the patient’s 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: ā€œI asked questions that I wouldn’t have thought about, instead of just going in and saying ā€˜that will be fine’ and not really bothering.ā€ The personalised information that patients received reassured them about their treatment choice: ā€œThey 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 it’s 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.

  • A big thank you to Herald and Times Staff

    Special thanks to members of The Staff Benevolent Fund of the Herald and Times Group for their fantastic donation received last month. We are actively raising funds for research into low-grade brain tumours which affect so many children and this donation will be used for that purpose.
  • Thank You to our Fund Raisers

    A Big Thank You to everyone who raised money at Waitrose Morningside in aid of Brain Tumour Action.

    Thank you to the Beauty Therapy Department – Advanced Holistic Therapies,Motherwell College, on behalf of the Committee, for your generous donation.

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  • New conTAK Center in Glasgow

    conTAK Scotland has opened its Drop-In Centre - the first of its kind - in the centre of Glasgow! For all young adults living with cancer, family and friends, the drop in centre offers support and friendship, regular get-togethers and the chance to meet a great bunch of folk who really do 'know how you feel’.
    You'll find us at Suite 320, 4th Floor, Central Chambers, 11 Bothwell Street, GLASGOW G2 or you can give us a call first on 0141 227 6764, or email contakscotland@gmail.com

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