The friendship and special bond formed by a group of patients and their wives led to the setting up of a support group to help others in a similar situation.
Guillain-Barré syndrome (GBS) and chronic inflammatory demyelinating polyneuropathy (CIDP) are diseases that affect the body’s nervous system. They can cause paralysis, severe limb weakness, pain, and loss of sensation that may, or may not improve over time; the time it takes to recover varies greatly between patients.
Phil Graham, 61, from Bishop Auckland, Ken Longstaff, 56, from Darlington and Barry Singh, 62, from Thornaby first met on ward 26 at The James Cook University Hospital in Middlesbrough during treatment and rehabilitation for these rare and unusual syndromes.
Dr Jenna Moffitt, clinical psychologist in neuropsychology, along with other inpatient occupational therapy colleagues, encouraged them to meet and discuss experiences and to get to know and support others experiencing GBS and CIDP.
‘The James Cook gathering of the GAIN’ group help and support GBS/CIDP patients, their family and friends. A diagnosis has a massive impact on patient’s wives and families and the group wanted to acknowledge this and provide support for them too.
The small, friendly and welcoming meet regularly to share real life experiences, focussing on relevant issues and areas of interest to GBS/CIDP patients which can affect their day to day lives. The group is flexible and will adapt meetings to support member’s needs and how best they can help benefit recovery.
Current and previous patients are very welcome to come along to the group and the next meeting will be held on Thursday 26 March at 1pm in The Beefeater Restaurant, Premier Inn, Morton Park, DARLINGTON DL1 4PJ. The guest speaker will be Linda Sergeant, community development worker, Healthwatch Redcar and Cleveland.
The group is also keen to raise awareness of the condition amongst health professionals and the general public.
Dr Jenna Moffitt is an affiliate of the group and her role is to promote the group in James Cook hospital and make inpatients and staff aware of it. She said:” “GBS and CIDP are very debilitating conditions that can be extremely stressful for patients and their families to manage.
“I think the kind of peer support and shared experience available through ‘the James Cook gathering of the GAIN’ group could be invaluable in helping people with these conditions to cope, and the group can play a very beneficial role in promoting awareness of GBS/CIDP.”
To contact the new group, ring Phil Graham on 07788 916166 or email firstname.lastname@example.org.