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/ West Midlands Muscle Group
Autumn Meeting /

Thursday 7th October: 7-9pm

Holiday Inn Express, Bickenhill Parkway, Birmingham B40 1QA

Attendees:

Mark Field (Chair), Karen Bayliss, Laura Bayliss, Cynthia and Geoff Hale, Traceyanne Pilato, Ian Parkhill, Paul Mace, Mr and Mrs Mace, Lisa Haddock and Darren, Steve and Michelle Millard, Pat and Andrew Hague, Larry Phillips, Neil Corfield, Mr and Mrs Corfield, Karen and Ian Withers, Mark and Sarah Walker, Sally and Dave Williams, Lynne Groves, Sue Gallagher, Charles Horton, Alexandra Crampton.

Key points from meeting:

  • Mark welcomed everyone to the meeting, and passed on apologies from Jane, who was unwell.
  • Introductions were shared, and Mark updated the group on news since the last meeting.
  • Dr Quinlivan from Oswestry is moving to take up a post in London. In the short-term, her clinics will be covered by Dr Nigel Smith and Dr Debbie Short Recruitment is underway for a replacement for Dr Quinlivan, and this will not affect the investment into services.
  • Mark has met with Dr Chikermane, Consultant Paediatric Cardiologist. Birmingham Children's Hospital.
  • Mark also shared an email from Rachel O’Connor at the West Midlands Specialised Commissioning Group. Main points:
  • She is working with Oswestry and Birmingham Children’s Hospital to manage the replacement of Dr Quinlivan with no loss of services.
  • Recruitment for the Care Advisors is expected to begin in the next fortnight.
  • She is meeting with Public Health doctors to work on reducing unplanned emergency admissions for patients with neuromuscular conditions.
  • She attended the launch of the Kite Appeal and will keep in touch with its progress.
  • Work is being led by Dr Roper on how the consultant posts will be implemented.
  • Alexandra updated the group about proposed changes to the NHS and to the benefits system. You can read more about our concerns about GP Commissioning here and on benefits here Get in touch on 0207 803 2865 or to discuss further.
  • Karen shared with the group the exciting news about the launch of the Kite Appeal in September – which is fundraising for a new Neuromuscular Centre in Kings Norton, Birmingham (more info attached). Karen talked through the architect’s plans for converting the former restaurant and nightclub into a physiotherapy, training and social enterprise centre – including the plans for the greenhouse, and funds permitting, hydrotherapy pool! The Centre will be aimed for people over 16 with an neuromuscular condition – there are over 4635 adults with these conditions in the West Midlands alone, over ¾ of which are currently not receiving ongoing physiotherapy. Karen shared details of the group’s new Facebook page and the next meeting of the Kite Appeal fundraising group – which are:
  • Monday 11th October: 6-30-8.30pm, BVSV – The Centre for Voluntary Action, 138 Digbeth, Birmingham, B5 6DR. Everyone is welcome – get in touch with Karen on to confirm attendance.
  • Lynne Groves, Specialist Physiotherapist from the Neuromuscular Centre, Winsford kindly came to give a talk about the importance of specialist physiotherapy for people with muscle disease. Key points:
  • Lynne has worked with neuromuscular patients, first in paediatrics and then in adults for close to 30 years.
  • The Neuromuscular Centre has 497 registered patients for physiotherapy, 147 seen on a weekly basis.
  • No one is ever discharged from the NMC.
  • There are 40 different types of neuromuscular conditions represented at the NMC, including a growing population of adults with Duchenne.
  • Anyone over the age of 16, living anywhere in the country, can come to the NMC for an assessment, if they can arrange their own transport. Currently patients range from 16-84!
  • Lynne spoke about the importance of active exercise, assisted standing, hydrotherapy, core stability exercises, intermittent compression and passive stretches.
  • There was a general discussion about physiotherapy – with Paul saying that he stopped getting physio at 16, and Ian discussing his 58 falls in the last ten years.
  • Charles Horton, Volunteer Fundraising Manager from the Muscular Dystrophy Campaign updated the group with the latest fundraising news in the region, including:
  • Swimming with Sharks – 6 places left this year!
  • Come Dine with Us – get involved and host your own dinner party!
  • A Question of Support – host your own sports quiz or brain-teasing quiz
  • Join a local fundraising committee – new committees in Sheldon and Pershore: find out more here

For more info, or to get involved, get in touch with Charles on 01244536551 or

  • Alexandra summed up the meeting, and urged people to get in touch with their local MPs, through the template letter here. You can find out who your MP is here or call 020 7219 4272.
  • Details of the next meeting of the group were announced:

West Midlands Muscle Group – Winter Meeting

Thursday 13th January 2011: 7-9pm

Holiday Inn Express, Birmingham NEC,

Bickenhill Parkway, Birmingham B40 1QA

  • Mark thanked everyone for attending and closed the meeting.