Mark tells the MS Trust about the care his wife Portia, who is living with advanced MS, receives and how he believes people with advanced MS need more support.
My wife Portia was diagnosed with MS in 1998 and is now being treated as end of life by healthcare professionals. Portia has regularly recurrent chest infections and antibiotics are beginning to lose their effectiveness. We really need to get better support out to those living with advanced MS, and I know the MS Trust are trying via the Advanced MS Champions Programme, which is great for those who can access the Advanced MS Champions already in place. Many people are still unable to access care for advanced MS and therefore we need more Advanced MS Champions in place across the UK as soon as possible.
GP's, however, are not well set up for complex long-term conditions like this. They are, by definition, General Practitioners, who do not have specialist MS knowledge or experience and have too many people in their responsibility to offer the level of support needed for people with advanced MS.
We do not receive support from a neurologist or an MS nurse since Portia stopped using Disease Modifying Drugs. We do receive support from the GP who is effectively the lead medical practitioner for Portia's MS and condition. GP's, however, are not well set up for complex long-term conditions like this. They are, by definition, General Practitioners, who do not have specialist MS knowledge or experience and have too many people in their responsibility to offer the level of support needed for people with advanced MS. Our GP therefore ends up firefighting, only called in when things are going wrong, as opposed to be being more proactive to avoid things going wrong for as long as possible.
We also get support from District Nurses who call in to the house once a day to administer the Glycopyrronium syringe driver, and to check all is ok at the same time. The team is excellent, and they are really caring overall. During the time they have been involved in Portia's care they have learned more about Portia and her condition than any other health professionals – but they can only stay around 10 minutes per day. The paid carer support we receive from a private care company, paid for by the NHS Continuing Health Care (CHC) does not offer this comforting NHS input, the interface with the other parts of the NHS and does not offer the same familiarity. It is great in terms of what it funds, but it could be so much better.
You fall off a cliff with no MS support once diagnosed Secondary Progressive.
The MS Nurses locally, while Portia was receiving Disease Modifying Drugs, were good. They knew MS so well as it was their day job. Alas, they're so busy with limited resource that their care basically stopped when Portia stopped using DMDs, and you fall off a cliff with no MS support once diagnosed Secondary Progressive. Neurologists don't 'hand over' to the GP identifying them as lead medic to take on the lead role on the condition, you are left to basically set this up yourself.
Any regular support and visits soon dries up and you are largely on your own.
We are sadly at an end stage now. An Advanced MS Specialist would have made a such a big difference through the complications of the later stages. Palliative Care is also very limited. I, as primary carer, have basically been trained up to administer the key drugs but any regular support and visits soon dries up and you are largely on your own. Support for those with Advanced MS, really needs to be support for that person's primary carer too, as the person with the Advanced MS will gradually loose more and more of their abilities and more and more will be on the shoulders of the primary carer.
All the way through MS, it's a very fragmented, fractured care and support jigsaw that you have to assemble yourself and no-one really ever takes full responsibility to help you get the full support in place. It's always, a bit here, a bit there. We need the pooling of experience to inform others so we are not all starting from scratch all the time.
The Advanced MS Champions Programme is a crucial part of the care jigsaw that delivers specialist knowledge and support to those most needing it that cannot be found from elsewhere. I must add that the Advanced MS Champions Programme is, like all the other parts of the MS care & support, limited by resources. We need to reach all with Advanced MS. Advanced MS is very much still hidden now, even within the MS communities. The impact on life at the advanced and end of life stages is immense, for the person with the MS, and for those immediately around them. We need to do so much more on this.