Maureen Kelly speaks to NINCA on Regional Alliances and support offered by NA UK

Maureen Kelly, centre manager of  ‘Neurosport’  in Liverpool, gave an excellent talk to NINCA on Regional Alliances and the support offered by NA UK. (Neurological Alliance  UK)

The  ’Northern Ireland Neurological Charities Alliance’ (NINCA) invited Maureen to speak at one of their meetings by way of getting some insight into the setting up of a neurological alliance and the functions of same.

The Mersey and Cheshire Neurological Alliance was the first of its kind to be set up.   It is a forum for bringing together representatives from neurological organisations across Merseyside and Cheshire. The Alliance works in close collaboration with the Neurosport Centre in order to improve the quality of life for people affected by neurological conditions.

 According to Maureen regional alliances almost came into existence by accident. People were going down different avenues. It was therefore felt that there was a need for cohesion. The Neurosupport Centre (originally called the ‘Glaxo Neurological Centre’) became the focal point. It was felt, however, that regional alliances would be a huge asset to the Neurological  Alliance (UK) as a whole.

In the beginning many alliances contacted ‘Mersey and Cheshire Neurological Alliance’ and the potential for a national alliance became clear. In 1999 regional alliances met for the first time as a group. At this time it was representatives who met rather than patients with neurological conditions.

A structure had to be established whereby regional alliances could become members. Mersey also appreciated that member groups would have to abide by the rules. Some regional alliances did become registered charities in their own right.

The ‘Mersey and Cheshire Neurological Alliance’ looked at professional networking, with groups who had been working so well individually coming together for discussion as one unit. The Mersey and Cheshire enables resources being available. These resources  were such things as meeting rooms etc. not financial.

Overall the role of the alliance is to remind people of the different conditions associated with neurological illness. Regional alliances were important.

By working together neurological groups could help the cause of their members. They needed to be person centred, fight for early recognition of the illnesses and prompt treatment, insist on quality of treatment. These and other points were brought together by the regional alliances.

Maureen’s talk was very informative  and showed what was possible when groups came together as one to fight for improvements in patient care. Each individual group obviously seeks what is best for its own members but as an alliance it must be remembered that strength lies in solidarity of numbers. We must champion our causes as one unit.

Introducing the ‘Young Shoulders’ Programme

The NI Cancer Fund for Children has over 30 years experience in working with children and young people who have received a diagnosis of cancer.  Three years ago, in recognition of the profound needs of brothers and sisters of these young cancer patients, the charity initiated the Sibling Support Programme, which aimed to provide emotional and social support through one-to-one and group activities, and which has from its inception gone from strength to strength. 

More recently the NICFC have been approached by a new set of parents, all desperately seeking support for their children.  These are parents who have themselves received a diagnosis of cancer and who are anxious and worried about the affect this is having on their children.  In response the NI Cancer Fund for Children initiated some research to find out what support existed in the community, where support services were operating, and where these families could be referred.  But with the exception of sporadic individual counselling services, and web based information sites, no organisation geared up to provide practical, emotional and social support could be found – not only in Northern Ireland, there was nowhere in the whole of the UK and, with the exception of Norway, nowhere in Europe.

As a result, and in line with NICFC policy of actively responding to need, the charity’s Board decided to launch a brand new and essential support service aimed at those thousands of children and young people living their lives with a parent who has cancer.

This service, ‘Young Shoulders’, will be officially launched in May 2008, and will, in this its first and pilot year, provide such support to these young people.  This will be achieved through residential weekends at our purpose built 24-berth log cabin, Narnia, incorporating programmes designed to develop a greater sense of self-worth and self-esteem, while assisting in learning appropriate and positive coping strategies and building strong and supportive friendships.
General Manager Gillian Creevy said, ‘This is such an exciting time for the organisation, we are looking forward to rising to the challenge of extending the charity into this new arena, and hope ‘Young Shoulders’ will follow on from this pilot year to become a key service in the provision of practical support to young people in need’.

The ‘Young Shoulders’ programme will be taking referrals from the Social Work team and Macmillan Information Centre, and will be led by Youth Programme   Co-ordinator Niamh McGrogan who can be contacted for information and take direct referrals on 028 9073 0686 or niamh@nicfc.com

:: NICaN Launch new handbook of Cancer Services:

On  Tuesday  26th  February,  2008,  NICaN  (Northern Ireland Cancer Network)  launched  its  new  handbook  ‘Cancer  Services  Directory  for  Patients,  Carers,  Families and  Friends’  at  Stormont.  NICaN  was  established    to  ensure  a  regional  approach   to  the  planning and  development  of  cancer  services.  It  is  a  way  of  bringing  together  professionals,  patients  and  public,  and  planners  to  work  collaboratively  to  coordinate  high  quality  cancer  treatment  and  care  across  organizational  boundaries.  It  is  comprised  of  a  Network  Board,  Network  Team,  Tumour  Site  Specific  groups  such  as  breast  and  lung  as  well  as  Theme  Groups  such  as  Primary  Care  and  Supportive  and  Palliative  Care.  The  involvement  of  individuals  affected  by  cancer  is  central  to  all  that  the  Network is  working  to  achieve.
Those  present  were  welcomed  by  Carmel  Hanna,  MLA,  under  whose  auspices  the  launch  was  held.  Carmel  Hanna  herself  has  a  long  history  of  involvement  with  the  medical  profession  having  qualified  as  a  Registered  Nurse  and  later  as  a  State  Certified  Midwife.  She  worked  in  hospitals  in both  Northern  Ireland  and  the  Republic  of  Ireland.  She  worked  abroad  for  a time  before  returning  to  Northern  Ireland  to  work  as  a  staff  nurse  in  the  casualty  department  of  the  Mater  Hospital  at  the  height  of  the ‘Troubles’,  a  period  of  her  life  which  helped  form  her  belief  that  any  political  change  must  come  about  by  peaceful  means.
Liz  Henderson,  ‘Nurse  Director,  Northern  Ireland  Cancer  Network’,  was  first  to  speak.   She  spoke  of  how  NICaN  is  trying  to  improve  the  situation  for  the  cancer  patient  in  Northern  Ireland.  She  said  that  patients  wanted  to  be  treated  as  persons,  with  access  to  whatever  they  needed,  be  it  information  or  treatment,  without  waiting  around.  She  said  that  the  cancer  journey  was  not  easy.  It  was  continuous with  each  step  following  on  from  the  one  before  and  this   launch  was  simply  one  of  those  steps  along  the  way. 
Liz  Henderson  stated  that  an improvement  in  cancer  care  was  being  sought  and  what  was  taking  place  at  Stormont  was  an  important  aspect  in  this  regard.  NICaN  was  about  partnership.  A  community  of  people  and  groups  working  together.  Patients  were  being  invited  to  give  their  views  on  cancer  treatment. NICaN  has  provided  a  forum  for  bringing  together  the  groups  which  will  contribute  to  and  influence  the  development  of  cancer  care.
The  aim  was  to  produce  a  ‘pathway’  where  patients  will  know  exactly  what  they  should  expect  in  terms  of  treatment  and  when  that  treatment  should  take place.  The  aim  was  to  have  a service  which  truly  met  the  needs  of  the  patients.
Lesley  Flack  gave  a  intimate  personal  take  on  the  journey  of  a  cancer  patient.  She  said  that  in the beginning  she  coped  thanks  to  the  help  of  her  medical  team.  Once  treatment  finished  she  felt  comparatively  alone  as  the  medical  team  was no  longer  there  to  lend  support.   Her  own  network  of  family  and  friends  was  what  now  became  important. 
Through  networking  she  discovered  groups,  organizations  which  were  available.  In  this  way  she  was  able  to  put  her  life  together.  For  her  NICaN  was  important  with  the  public  and  patients  working  together.
Elvira  Lowe  ‘Patient  and  Public  Involvement  Representative’,  spoke  of  the  importance  of  counseling.  For  Elvira  access  to  counseling  was  extremely important. 
Elvira  has  been  involved  with  breast  cancer  and  reconstructive  surgery.  For  her  patients  want  and  need  to  know  what  services  are  available,  from  both  medical  and  voluntary  sectors.  Although  services  are  available  often  patients  were  stumbling  across  them.  They  had  to  dig  to  discover  what  was  available.  Signposting  was  important.  Patients  need  to   be  guided  towards  appropriate  services.    She  expressed  her  thanks  to  NICaN,  especially  Janis  McCulla  (Patient  &  Public  Involvement  Coordinator)  and  Danny  Sinclair  (Patient  Information  Co-ordinator),  both  of  whom  were  mentioned  by  all  speakers  for  the  part  they  play  in  NICaN.    The  hope  is  that  the  handbook  will  enable  patients  to  take  the  necessary steps  along  the  road.
The  final  speaker, Ms  Norma  Evans,  Chair  of  Cancer  Network  Board,  said  that  NICaN  was  very  important.  Norma  explained  that  she  had  lost  her  nineteen  year  old  son  to  cancer.  She  felt  her  contribution  to  NICaN  was  very  important  to  her  personally.  It  was  tremendous  to  have  relevant  information  readily  available  to  cancer  patients.  Something  patient-focused  was  essential.  Norma,  the final  speaker,  signed  off  by  again  thanking  the  NICaN  team for  all  their  hard  work. 

On  Thursday  21st  February  NINCA  (Northern  Ireland  Neurological  Charities  Alliance)  held  another  meeting  in  the  Multiple  Sclerosis  Headquarters,  Annadale  Avenue,  Belfast.  Once  again,  however,  there  was  a  disappointing  attendance.
In  attendance  were  the  Motor  Neurone  Disease  Association,  Epilepsy  Action,  ‘Brainwaves  N.I.’  and  Multiple  Sclerosis.
Because  of  the  poor  response  a  number  of  viewpoints  were  put  forward  regarding  what  sort  of  future  lay  ahead  for  the  Alliance.
Two  particular  suggestions  were  muted.  One  was  the  setting  up  of  some  kind  of  forum  where  groups/charities   could  come  together   to  discuss  any  major  points  which   might  be of  interest  to  the  neurological  alliance.  The  other  suggestion  was  the  simple  reduction  in  the  number  of  meetings,  perhaps  quarterly  meetings.
Topics  were  looked  at  but  obviously  such  a  small gathering  could  not  really  do  much.  Some  of  these  topics  were  the  consultation  document  which  the   Department  of  Health,  Social  Services  and  Public  Safety  was  preparing,  prescriptions,  benefits  available  to  patients/carers  and  the  number  of  neurologists  at  present  in  Northern  Ireland.  These, it  was  suggested,  might  be  discussed  at  the  next  meeting  of  NINCA.
It  was  decided   to  call  a  meeting  for  Thursday,  17th  April.  
It  was  pointed  out that  ‘Carers  Week’  would  be  from  9th-15th  June.  It  was  felt  that  raising  awareness  of  carers  was  important.  ‘Carers  N.I.’  was  giving its  support.

::Links to Other Websites::

The united Brain Tumour Campaign www.ubtc.co.uk/charities.htm

Brain Tumour UK www.braintumouruk.org.uk

A resource website for those campaigning to reverse NICE's initial policy to deny new therapies to brain tumour patients in England and Wales and Northern Ireland people may wish to support this campaign as well ww.theibta.org/NICE.htm#General

NICE is the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health. They are currently dealing with recommendations concerning new therapies carmustine implants and temozolomide. www.nice.org.uk/