Peter shares why he thinks an Advanced MS Champion could have improved the quality of life for his late wife, who had advanced MS.
Let me tell you why we need Advanced MS Champions. I don't have MS but my wife did.
Advanced Multiple Sclerosis brings with it many symptoms and problems that make worse an already devastating array of disabling issues to deal with. Although good therapies exist to help slow down disease progression for those with Relapsing Remitting MS and to manage symptoms, for those with progressive forms of the disease and for those severely affected by an advanced form, virtually no treatments exist.
After the disease moved to SPMS and the DMDs were withdrawn, so too was the easy access to specialist and ancillary care, just when she needed it most.
For the first eight years following diagnosis my wife's disease followed a relapsing remitting (RRMS) course, but then it became secondary progressive (SPMS) which, for her, marked the beginning of a rapid deterioration in every possible way. She quickly became bed-bound and unable to do anything for herself for the last 15 years of her life. I gave up work to look after her. During the RRMS years my wife received disease modifying drugs (DMDs) and easy, regular access to specialist and ancillary medical care and treatments. This focus from the specialist teams was excellent but after the disease moved to SPMS and the DMDs were withdrawn, so too was the easy access to specialist and ancillary care, just when she needed it most.
Foot drop, double vision, double incontinence, urinary tract infections, chest infections, aspiration pneumonia, sepsis, headaches, crushing fatigue, chronic constipation, chronic diarrhoea, intention tremor, choking episodes, excessive saliva production, pressure sores, bone fractures, urinary catheter blockages, muscle spasms, muscle contractures, bone fractures, speech loss, breathing difficulties, thinking difficulties, general oedema, PEG tube feeding, paralysis. These are just some of the challenges faced by my wife in the 23 years since she was diagnosed with Multiple Sclerosis.
Many of these challenges arise from long-term immobility but some are more likely or need to be treated differently from other bed-bound patients because of the additional underlying neurological disease including cognitive deterioration. The focus for RRMS therapies in our health area seems to be very much aligned to rehabilitation but for advanced MS, it needs to be focused on prevention. Obviously, the MS progression can't be prevented (not yet, unfortunately!) but the burdens associated with the symptom load caused by immobility partially can.
Standard treatment protocols do not always work and can sometimes make things worse. That was, certainly, my wife's experience. But the capacity of a GP, community nurse, or even an MS nurse specialist to do anything other than treat each symptom as it appears means that more time is spent reacting to devastating new symptoms than would be needed to prevent them arising in the first place.
My wife died at 59 years old, her cause of death: Multiple Sclerosis. I believe she could have lived longer and with a better quality of life if she had an Advanced MS Champion on her side.
This is where an Advanced MS Champion would make all the difference. Taking a long view of the potential risks ahead, facilitating swift access to specialist treatment at the right time rather than when it is already too late, advocating for treatments such as early antibiotic treatment to prevent infection escalation and the correlated acceleration of MS disease progression, helping MS patients live fulfilling lives despite advanced disease. Their value does not diminish the great work that the local GP and MS nurse specialists try to do, but it takes a burden of complexity out of the equation, cuts out many avoidable emergency admissions, and removes the bleak sense of isolation felt by patients and their carers.
My wife died at 59 years old, her cause of death: Multiple Sclerosis. I believe she could have lived longer and with a better quality of life if she had an Advanced MS Champion on her side. For others with advanced MS, the MS Trust appeal for funding is the only way to seed fund this essential specialist initiative and help NHS trusts realise not only the value to the patient but the savings from reduced emergency admission of patients with very complex needs.