Newsletter 1
* Friendship & Support
* Advice & Information
* Help & Advocacy
Suffolk Youth and Parent Support GroupFor Children, Young People & Young Adults with long term medical Needs
www.suffolkmeandyou.org.uk available on the website or sent by email
Newsletter 1
March 9th 2003
I feel it would be good to have a by-monthly or so newsletter so all carers and young people do feel, informed involved and "included", even if they are unable to join in group meetings. We are all thinking of those families and suffers who are having a rough time.
Special hi to Steve our "mentor" over recent years. We're thinking of you.
Tess, AyMe local parent contact is seeking out others who might wish
to join us. Let her know if you come across anyone. We may like to
create a data base of names if possible? In addition, she is looking
into regaining some professional input to the group.
Group contact number is Hazel on 01473 280403
There was a powerful letter from a Suffolk parent in AyMErs Cheers Extra.
"The long Road to Recovery and the Bumps Along the way".
It was very brave to write so openly, but it is so essential that others are aware of all the pitfalls and heartache out there.
There seem to be more and more positive reports from patients referred to the Paget Hospital toTerry Mitchell's ME/CFS team, both children and adults.
On a positive note, we have now secured £6oo from County Councillor's Locality Budget, Briony Rudkin (L), Inga Lockington, John Kelso, and Cathy Pollard (LD) and Steven Hudson (C) for posters and leaflets to raise awareness and to be distributed amongst, education, health, voluntary groups, DAB, CAB etc. about the needs of chronically sick children (mostly those with ME).
We have to design and print soon. All suggestions for content, poems, drawings info etc will be welcome!
Greg and Clive are busy with Logo designs and other ideas.
We have ordered an "Education pack" from AyME and a Benefit's Advice Booklet for the Group.
These can be used to raise awareness with education staff and schools.
We have booked Ipswich Library to do a display for ME Awareness week.
If you are willing or wish to make a contribution, last year's examples are on the website for reference!
We could have another poster theme with contributions of drawings, prose or poems, words, cartoons etc as we did last year.
We were thinking of the theme;
What it's like for ME..... one year on!
Two of us recently attended a Carers forum set up to help us petition for better services locally from the new PCT and also to tell us about support we can expect when we are unhappy with local practitioners and health care services. It was an interesting, worthwhile and an enjoyable day at Belstead House and it included a most excellent free 2 course meal. There are further sessions planned in March, April, May and June.
The recent Suffolk's Special Needs Information Network"SPIN" newsletter had articles from a number of parents with "special needs". Letters from parents with a range of difficulties seem to be battling against the system. There is such an overlap of experiences.
Suffolk LEA have recently mitigated against young people with ill health by re-organising their "special needs funding " in schools! ME/CFS kids don't usually "qualify" for many "points / funding" for extra help and support in schools!
However, in April, the government has provided a further £84 million to "Vulnerable" children. I understand sick kids on home tuition should be entitled to a statutory 10 hrs provision if they can manage or want it. Watch this space!
We now have 3 area based Education Other than at School Co-ordinators appointed to ease and facilitate entitlement for sick children in Suffolk. Alicia Pegg Southern Area and Hazel Marsland- Askew, Northern Area, Barbara Ghezzi, Western Area have been contacted and invited to the group to meet with the young people. They can be contacted via 01473 583000
There may be some important, positive news relating to post 16 education funding for "Additional Needs Learners" announced very soon! Again, watch this space!
In Cheers there was some good news from the other local family.
Chris has made a little progress and all the family have seen a little light at the end of a very, very long tunnel.
It's good to have AyME on board and so influential- they indeed are many families "Lifeline".
I was fortunate to attend the launch by Professor Carol Black, President of the Royal College of Physicians. of two important, collaborative reports on chronic fatigue syndrome (CFS)/M.E. in London on Wednesday 15 January 2003 at the Royal College of Physicians.
"Chronic fatigue syndrome /ME Trusting Patients' Perceptions of a multi-dimensional, physical illness" & "The physical and the Mental In CFS/ME. Principles of Psychological help".
They are intended to inform Health Practitioners.
The main author of both reports is Richard Sykes, who has a varied background as an academic philosopher, as a social and community worker, as former Director of Westcare UK (now merged with Action for M.E.) and as Co-ordinator of the National Task Force on CFS/ME.
Groups and charities can request copies of the reports from AfME's Carole Hounsell at carole@afme.org.uk larger quantities for distribution to doctors and PCTs can also be ordered from Richard Sykes at: richard@rsykes.swinternet.co.uk
www.afme.org.uk/news/newreports.shtml to view both reports.
Imega-e,
the internet forum continues to advise, inform and provide up to
the minute news about all aspects of ME/CFS. All info has been
archived for group use."Experiences and Feelings of Youth and their Carers of living with ME/CFS"
Thanks to our website sponsors Keconnect Internet & alternative health retailers Fruits of the Earth, Orwell Street, Ipswich, for their recent donation.