"Our guardian angels are brilliant!"
About: Western General Hospital / Neurology Western General Hospital Neurology EH4 2XU
Posted by Clearer419 (as ),
I care full-time for my wife who has Primary Progressive Multiple Sclerosis (PPMS). I would be grateful if you were able to use the following.
My wife was diagnosed with PPMS 11 yrs ago. She was discharged from the Neurology Dept at Edinburgh Western General (on the day of Diana's funeral!) with very little information, advice or support and we have had a steep learning curve ever since.
In general we have found that none of the specialities, consultants or agencies seem to be able to talk to each other or work together; but there have been 3 notable exceptions.
After 6 months we were invited to a review with Professor Sandercock at the Western General Neuro Dept Outpatients Clinic. He now regularly reviews her symptoms/medications and follows up everything. After a few years her disability progression was increasing, so he referred us to the Lanfine Unit based at Liberton Hospital under Professor Stewart Donald. They both liaise and discuss all aspects of her treatment. Together they have even written letters on our behalf to our landlords regarding adaptations referred her to Spasticity Clinics, Physiotherapy, Urology etc and also wrote in support of funding applications for a moto-med exerciser.
As my wife is painfully shy, for them to have achieved the level of respect and trust from her such as she can open her feelings to them is a real tribute to the manner in which they approach patient care. Although they both have to be professional in their dealings with us, we find it hard not to regard them as friends as they are both brilliant. Finally I would like to acknowledge the work of her occupational therapist Ms Hart from Edinburgh Murrayburngate Social Work Department. She was our only direct source of help and support for the first year and has worked tirelessly on her behalf for the past 11 years.
She says she loves getting letters from the other two as they are always so positive and upbeat and helpful and if I were to add full of empathy, caring, compassionate, knowledgeable and kind. I still could not adequately begin to tell you how absolutely brilliant our guardian angels are, hence this totally deserved thank you to Ms Hart, Dr Donald and Professor Sandercock.
I guess our experiences have shown that if you are lucky enough to find a good GP/ Consultant/ Neurologist, it's half the battle. If these key players can also form a working relationship where they support and liaise with each other, then the NHS works spectacularly well. If these key professionals can also form a working relationship that includes the patient and their carer(s) as lay partners in the healthcare provision process, the mutual trust and respect that results is more likely to lead to effective disease treatment plans and more effective management of symptoms.