Welcome to Brainwaves NI

Rose Holt presents a cheque for £3,000 to ‘Brainwaves N.I.’ treasurer Nathena McCloy

On Tuesday 11th March 2008 I was invited along to St Paul’s Church, Ballinderry Road, Lisburn to receive a cheque on behalf of ‘Brainwaves N.I.’.

Our charity was nominated by Mary Holmes and was accepted by their fundraisers as their chosen charity for this year. The cheque was for £3,000.

They achieved this through holding indoor bowls events and collections. These events were sponsored by J.C. Pattersons.
It was during one of these matches that I was presented with the cheque by Mr Brain Allen on behalf of the above fundraisers and J.C. Pattersons.

Many thanks to all who took part as either player or spectator.
Article by Rose Holt

THE NEXT BRAINWAVES MEETING WILL BE HELD ON WEDNESDAY 10th SEPTEMBER 2008 AT 7.30PM, IN THE SEMINAR ROOM IN WARD 4D (OUR NEW VENUE FOR THE MEETING).

Thanks to Karen & Her Friends:

To Karen Dennison and her friends we say thank you for the very generous donation of £2,254.00.

Karen lost her husband Philip to a brain tumour and this donation is in lieu of flowers for Philip.

Many contributions were made, too many to acknowledge individually in our news-sheet.

To those who contributed our thanks. To Karen our deepest sympathy

The "Bets Club" On Cue Again:

To ‘The Bets Club’ our thanks for their kind donation of £125.

This is not the first donation we have received from the club and we thank them sincerely for their continued support.

Obviously such regular support is greatly appreciated by our group.

Thanks to EMC:

We would like to acknowledge the generous donation of £100 which was given in support of the girls from McLaughlin & Harvey by EMC Construction.

The girls recently completed a 13 mile marathon walk and nominated 'Brainwaves N.I.' as the charity of choice.

Our sincerest thanks to Jane Cherry and her friends who gave so much of their time and energy and who managed the magnificent sum of £2,400 for our group.

Thanks also to The Rotary Club of Belfast West:

Our thanks also to 'The Rotary Club of Belfast West' who made the welcome donation of £100 to our group.

News & Events:

:: Maureen Kelly speaks to NINCA on Regional Alliances and support offered by NA UK Read More...

:: Janis McCulla addresses May Meeting Read More...

:: Young Shoulders programme Read more...

:: NICaN launch new handbook of Cancer Services Read More...

:: MEDB BRADLEY MEETS WITH COMMITTEE Read More...

:: A very sincere thank you to ‘Brainwaves’ for affording me the opportunity to attend the Pituitary Foundation’s 7th National Conference in April (27th-29th). Read More...

:: Thanks to EMC & the Rotary Club of Belfast West for their recent donations.

:: Jane Cherry from McLaughlin & Harvey presents Kate Ferguson from Brainwaves NI with a cheque for £2500.

:: Karen thanks Brainwaves N.I for their contribution to Philips wheelchair accessible vehicle. Read More...

:: A group of 12 ladies took part in the 13 mile Marathon on May 1st. As well as raising money on their own they are sponsored by McLaughlin & Harvey. Read More...

:: On Thursday 9th March Brainwaves NI., presented a cheque to the value of £5000 to Dr Philip Weir to assist with his research. Read More...

:: Generous Donations have been given by the Maternity Department, Johnston House; Mrs Doris Griffin; Mrs Louise Black; Sylvia Brown and Ann Marie Hughes. Read More...

NEW TOPICS:

NEW TREATMENTS TO BE DENIED PATIENTS

DOCTORS DEMAND BRAIN CANCER DRUGS

Mr Nagaria speaks to ‘Brainwaves’ members at June meeting

Mr Nagaria and Elaine Hayes

Mr Nagaria, lead clinician for the Neuro-Oncology MDT, spoke to members of ‘Brainwaves N.I.’ at their meeting on June 11th. He specializes in spinal surgery but a certain percentage of what he does has to include brain tumour work.

Mr Nagaria spoke on the ‘Outcomes for brain tumour’ document and changes to service provision.

He covered many of the types of brain tumours which our members are familiar with and explained both treatment and possible outcomes. Everything was explained very thoroughly and sensitively.

Most of his talk focused on malignant tumours such as astrocytomas/gliomas and the treatment of same. Some members, whose tumours were benign, felt that their situations were given less attention. Mr Nagaria agreed with this to a certain extent but suggested that the reason was the probable difference in outcomes. Those members who either themselves had a benign tumour or whose relatives had a benign tumour felt more attention could be paid to their situations. Again, Mr Nagaria was not unsympathetic to this suggestion.

The MDT (Multiple Disciplinary Team) is something which Mr Nagaria has taken a great personal interest in. It comprises many and varied professionals who meet regularly to discuss best procedures for patients. It comprises neurosurgeons, CNS nurse (Medb Bradley), physiotherapists, oncologists, neuropsychologists and others. Whereas, in past years, such discussions/decisions were undertaken by neurosurgeons alone, now many other professionals are involved.

Mr Nagaria emphasized the importance of the background staff and he felt those assisting him were of the highest calibre.

The idea behind the MDT is that it is patient centred. Besides surgery other important aspects of the patient’s treatment/recovery are looked at hence the inclusion of medical professionals besides neurosurgeons.

The subject of an extra CNS nurse arose. Mr Nagaria stated that he had attempted to have a second CNS nurse employed to take some of the load off Medb Bradley. He had, up to now, been unsuccessful as the funding was not available.

Mr Nagaria also mentioned the possibility of having patients keep a record of how they were feeling by writing daily comments in a diary as long as they felt comfortable doing so. He knew that this was a topic which had to be approached sensitively and that patients had to be receptive to the idea. One of our members actually said that she had kept a diary from the time she was diagnosed. While the members at the meeting were not hostile to the idea they felt patients had to be willing participants in such an undertaking.

Mr Nagaria also broached the subject of information booklets. He said that he was in the process of putting together booklets which would be available to patients and which hopefully would be of benefit to them. Those present at the meeting suggested the possibility of ‘Brainwaves N.I.’ funding the publication of these booklets. It was agreed that Mr Nagaria send a copy of one of his booklets, or a copy of the information he intended putting in the booklets, to Tommy Brannigan, chairperson of the group.

Macmillan and Cancerbackup to Merge

Macmillan and Cancerbackup announced in January that they have agreed to merge.

According to Macmillan it is a great opportunity to build on the strength of both organisations, enabling them to develop a joint vision to reach more people affected by cancer with the information and support they need, when and where they need it.

Macmillan Cancer Support will continue to deliver its full range of medical, practical, emotional and financial support, and Cancerbackup’s existing services will be expanded and enhanced.

Macmillan Cancer Support and Cancerbackup are delighted to announce that they have agreed to merge. The merger will further the aims of both charities to ensure that, across the UK, everyone affected by cancer will get faster and enhanced access to high-quality information at every stage of their cancer journey.
Both Macmillan and Cancerbackup are dedicated to supporting people affected by cancer. Macmillan develops and provides a wide range of medical, practical, emotional and financial services, including the distribution of information. Cancerbackup is the specialist cancer information charity, recognised as the UK’s leading source of high-quality information on every cancer.

The merger, which will be effected by a transfer of Cancerbackup to Macmillan Cancer Support, was expected to take place within approximately six weeks of the January announcement. On completion, two of Cancerbackup’s existing trustees, including Dr Maurice Slevin, currently Chairman of Cancerbackup, will join the expanded Board of Macmillan Cancer Support.

The merger will enable Cancerbackup’s existing services to be expanded and enhanced as they join with Macmillan’s full range of services, to the benefit of people affected by cancer, their families and carers. Information services will be delivered under the sub-brand Macmillan Cancerbackup and will include:

· improved telephone helpline support through an enhanced direct cancer information service with access to cancer information nurses, nutritionists, financial and other experts

· enhanced information on the Macmillan Cancerbackup website and in booklet and new formats, based on need

· accessible, approachable information and support centres through the UK, not only providing high quality support but also acting as central points for outreach services

Charity Reg No. XO 1519/94.

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