Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Scotland - services provision: seminar by Action for ME

Discussion in 'General ME/CFS Discussion' started by anni66, Aug 15, 2017.

  1. anni66

    anni66 mum to ME daughter

    Messages:
    207
    Likes:
    815
    scotland
    Today I participated in a seminar hosted by Action for ME in Edinburgh.

    I am a member by default having transferred over from AYME where i used the parents' forum which was a lifeline .

    I was unaware as to the politics of ME at the time ( and boy have i learned a lot about this since) The attendees were a mixture of pwme adults, mothers, carers, and the single in post specialist nurse from Fife, Keith, a ME association patient rep, a gp with an interest and experience gleaned over many years, and an east lothian council rep from their services provision. 2 scottish AFME officers,and Sonya Chowdhuray and Jonah Grunsell.

    Scotland is a bit of a black hole in terms of service provision and it was essentially a discussion group to try and inform ideas to provide targeted support ( scottish govt has provided a small budget).

    I did not quite know what to expect, there were particularly harrowing stories from two mothers relating to the treatment of their daughters 10+ years ago( when both were under 10 years old) Emma Shorter' s mum ( millions missing Edinburgh) on how GET induced severe ME for her daughter, discussion re severely affected , educating health providers and educationalists and addressing the stereotype that has prevailed for so long.

    There was a will to work with other charities to enable better resource management to be able to support more biomedical research and people. I was apprehensive, given past history, but there was a real passion and drive to improve things, so perhaps follow through will happen.

    Good suggestions from the discussion being

    • Utilising guidelines from other chronic illnesses to devise guidelines/ protocol for healthcare for severely affected to enable regular engagement

    • Develop a food delivery programme for fresh healthy food which could be used as a means of establishing contact regularly with those who are housebound which could enable further resources and services to be accessed.This was a suggestion from a carer and she' s working up a business plan but really needs a mentor. Good way to get decent food to those with little energy to cook.

    • Establish a centre for excellence which can also be accessed virtually

    • Provide info and education for gps/ health professionals

    • Provide same for schools and a specialist team to deal with problems. Schools simply do not understand and are too tied up with attendance and attainment targets to see any bigger picture.

    • Visual advocacy which addresses stereotypes

    • Support of unrest film to maximise locational coverage

    • Establishment of more professionals like Keith. He is the only paid in post specialist Scotland wide.

    • Establishment of virtual education in scotland ( this would help kids with other chronic illnesses and mental health issues)
    All in all positive. It will be interesting to see what can be taken forward.
     
    Last edited by a moderator: Aug 17, 2017
    MEMum, Esther12, erin and 10 others like this.
  2. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,322
    Likes:
    4,358
    London
    I wonder what the MEA person and the established Scots group leaders make of this?

    When AFME tried their last foray into Scotland a couple of years ago there was widespread resistance from the local groups. Be interesting to know if AFME has taken on their complaints from last time and if there is agreement on these being the most serious issues that need to be tackled.
     
  3. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,462
    Sorry to be cynical but I still don't know how AfME can lead on any of this whilst supporting Esther Crawley.
    It all sounds good but until AfME denounce/condemn FITNET, MAGENTA,SMILE, and ECs diagnosis of children with severe ME as having PRS I can't trust that what they are doing is completely in the interests of patients long-term.

    eta: forgot to also mention that their current GP webinars were done under the guidance of Hazel O'Dowd (PACE).
     
    Last edited: Aug 16, 2017
  4. emsho

    emsho

    Messages:
    47
    Likes:
    482
    Scotland
    @anni66 I'm glad you found the meeting positive and it's good to hear what was discussed!

    I asked my mum to attend to voice opposition for CBT/GET and ensure the new Scottish AFME staff, who I think is new to the world of ME, knew about the damage it can cause. She was frustrated/depressed by the NHS reps belief in CBT/GET for mild/moderate ME and we didn't talk about much else! I have similar concerns to @slysaint.

    She did she say she was pleasantly surprised by Dr Purdie and Keith the fife nurse. I don't know anything about either of them, she did say that she only spoke to them briefly, but that they both seemed good:).

    They are already established in Scotland. Some of the biggest local groups receive funding from Action for ME. Afme have received a few grants from Scottish government including £300,000 grant for self management and peer support.
     
    Last edited: Aug 16, 2017
    dangermouse, MEMum, Esther12 and 6 others like this.
  5. anni66

    anni66 mum to ME daughter

    Messages:
    207
    Likes:
    815
    scotland
    The MEA person was advocating for severely affected, and whilst not brimming with enthusiasm he wasn' t negative. Think he has a watching brief . Sonya Chowdhury did mention the falling out, but didn' t go into any details. She did seem to genuinely want to engage to try and maximise impact . We will have to wait and see what comes out of it- talk is fine, action is what natters.
     
    MEMum, Esther12 and ukxmrv like this.
  6. anni66

    anni66 mum to ME daughter

    Messages:
    207
    Likes:
    815
    scotland
    I share your concerns. The experiences of the two mothers were horrific, and there did seem to be genuine concern ( don' t know if this is due to SC experience with her son or not). Emma' s mum put the GET case across and seemed to get a wee bit of traction. After speaking with one of the mum' s she intimated that she had been advised in discussion by Keith( who had been involved in her daughter's case but did not have any paediatric training ) to make a complaint so perhaps tide turning. I have since contacted the Scottish rep to advise that working with other groups will only be viable if trust can be rebuilt and that stances on PACE must be addressed.
    Re seminars, i don' t have knowledge of Hazel O' Dowd, i thought Julia Newton delivered
    Some, but could be wrong.
    I definately think they have a problem with their past, perhaps their actions going forward will indicate if anything can change
     
    dangermouse, MEMum and Valentijn like this.
  7. anni66

    anni66 mum to ME daughter

    Messages:
    207
    Likes:
    815
    scotland
    Yes, there was a definate wooliness re GET/ CBT which needs to be debunked. East coast had specialists, in Ayrshire we don' t , but we don' t have medical staff willing to outside defined treatment ( they don' t push it though) . Keith was good - spoke with him briefly beforehand . He' s frustrated by lack of support and up to speed with potential treatments. We need 100 Keiths and to dhout a bit louder.
     
    dangermouse, MEMum and Jan like this.
  8. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,462
    dangermouse and Esther12 like this.
  9. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Thanks for all the info. Great to get the impressions of someone who was there.

    To me, this is Action for ME all over:

    Brimming with passion and drive to engage, maximse impact and improve things... but then when it comes down to the details, they keep making things worse. A lot of people wanted to give them a chance when Sonya was appointed, after PACE had come out, but she has been terrible for years now. She tells people what they want to hear to their faces, but when it comes down to it she is not willing to stand up to power.
     
    dangermouse and Valentijn like this.
  10. anni66

    anni66 mum to ME daughter

    Messages:
    207
    Likes:
    815
    scotland

See more popular forum discussions.

Share This Page