Patient’s special bond benefits future patients

Posted on in Services, Support groups

James Cook gathering of the gain focus groupThe friendship and special bond formed by a group of patients and their wives has 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, Dr Angela Birleson occupational therapist, along with other inpatient occupational therapy colleagues supported Ken, Barry, and Phil and their wives while they were on the inpatients ward. They encouraged them to meet and discuss experiences and to get to know and support others experiencing GBS and CIDP.

A diagnosis of GBS/CIDP can be alarming and overwhelming and can include long periods of time in hospital. The trio became firm friends, sharing their experiences and supporting and keeping each other positive throughout their treatment. Their wives, Janet, Bev and Balbir also supported and helped each other, also becoming friends through their shared experiences.

The aim of ‘The James Cook gathering of the GAIN’ group is to 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 group plan to 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 – a social event and meeting combined – will be held on Tuesday 21 October at The Toby Inn, Marton Road, opposite The James Cook University Hospital starting with lunch at 1pm.

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 have seen how Phil, Barry, Ken, Bev, Janet, and Balbir have supported and helped each other. 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.”

GBS patient, Barry Singh was the first of the group to go home. He said: “My shared experience of GBS with Phil and Ken on the ward has been invaluable in helping my recovery and giving me hope for the future.

“I am able to share how I am coping with the common everyday stuff, which will help when they go home. It’s a two way process and we have all benefitted from our friendship.”

To contact the new group, ring Phil Graham on 07788 916166 or email phil@filmar.co.uk