My sister and Pamela Macfarlane, CEO, MS Trust, presenting the winner’s cup for the Chelsea Thoroughbreds October Club Charity Fillies Handicap Stakes at Ascot

oh we did have a lovely day at Ascot for the King George meeting last week. My sister Holly and I were guests of The MS Trust and The October Club, and had a lovely lunch with them before the racing started.

We have long been supporters of The MS Trust, a charity which believes that no one should have to manage MS alone. (For example Clinique generously donated to them when I worked with them on the Difference Makers campaign last year.)

They provide trusted information to help people with MS live the best life possible; train and educate MS health professionals to offer the best care and fund MS nurses in the areas of greatest need. Their information is free so they rely on donations, fundraising and gifts in wills to fund our services.

The MS Trust received some amazing news this year: The October Club (a charitable organisation founded 30 years ago by City-based individuals working in equities) has selected it as their Charity of The Year. This annual award goes to whichever small charity has, by way of a rigorous selection process, best demonstrated how they will use the monies raised to make a transformative change. As a prelude to the Club’s annual fundraising ball in October, they host an Ascot Race Day which also raises funds for The MS Trust – hence our invitation.

I asked Holly if she would like to write a guest post for me after our day out, so over to you Holly. (The photos from our day out are at the end of this post.)

As long term readers will know, I am Sasha’s younger sister and I was diagnosed with MS in 1998.

I was thrilled to be invited (along with Sasha who uses her platform to raise awareness of MS and fundraise for the MS Trust) and it was a great day. I could use this post to describe the day; instead I am using it to shine a light on the vital, ground breaking work which the MS Trust is now able to undertake because of this very significant financial support.

The Trust is developing a pilot project for Advanced MS Nurses. The Trust played a critical role in the creation and development of MS Nurses – the first post being created in 1996 – and has continued to fund ongoing professional development for them alongside campaigning to demonstrate their value and safeguard their posts, which are at constant threat of disappearing due to short sighted cost cutting. In some cases the Trust has funded posts itself. Despite this, there remains a critical shortage nationwide and are there are still many, many people across the UK who do not have access to one.

An unfortunate consequence of the explosion of disease modifying treatments (when I was diagnosed there was 1 with very limited availability – now there are 12 routinely offered, with more on the horizon) is that the workload of the existing MS Nurses is now dominated by administering these.

In practice this means that anyone with MS whose disease has progressed beyond the point where any of these treatments might help (or who has tried them without benefit), has no real access to any kind of support. Many of these people, who inevitably have complex needs, feel justifiably ‘abandoned’.

This is what the MS Trust is addressing with its Advanced MS Champions Programme. This will initially be a pilot, the success of which it can then use to put together a business case for their adoption by the NHS. The need for them is patently clear but this pilot should demonstrate that by preventing hospital admissions there will actually be a net cost saving.

The plight of those with Advanced MS is something I get very cross about. To me it is obvious that those with the greatest need should receive the greatest support.  Sadly this currently seems to be a minority view. I abandoned my support for the MS Society (the largest of the MS charities), when it made a policy decision to withdraw funding for its specialist respite care centres for those with Advanced MS, choosing instead to divert funds to provide ‘mini breaks’ for people who did not need the levels of care provided by these centres.

The justification being that it was ‘unfair’ to spend so much money on those unable to help themselves: far more ‘fair’ to spread funds more widely so more of those less severely affected, or carers who were less burdened, could go on holiday. I can not describe the devastating consequences of this decision in any sort of measured way, so will not do so here. To those cast adrift by this cruelty (which includes the army of unpaid carers who lives are dominated by the complex. unrelenting needs of loved ones), the creation of Advanced MS Champions could literally be a lifeline.

Most people only have a hazy understanding of MS and due to a trend of wanting to not upset or frighten people who are newly diagnosed or currently only minimally affected, there is an emphasis on downplaying just how bad MS can get. Yet what about those who literally cannot speak, how can their voices be heard? I hope that Advanced MS Champions will be a mechanism by which these forgotten patients can become more visible, but in the meantime I will use my voice whilst I am still fortunate enough to have it.

http://www.octoberclub.com/charities-helped/charities-helped

“The MS Trust was born out of a desire to help people living with MS now.  The best way to do this is to ensure they have access to the specialist care they need.

Over the years we have evidenced the value of MS specialists and, through our GEMSS (Generating Evidence in MS Services) programme, have worked with MS teams to help them evaluate and develop their services.

Our latest research has shown that people with advanced MS feel isolated, overlooked and without hope.  The October Club funding will enable us to work with the NHS to bring the needs of this important group into focus again and help them get the support and direction they need in their care.

For every person with MS that The October Club helps, there will also be close family and friends who will feel benefit because they will no longer have to champion this cause alone.

As a small charity it is challenging to have a major impact on people’s lives, but with the support of The October Club we can effect a true transformation.”

Pamela Macfarlane, CEO, MS Trust.

sasha wilkins ascot
I’m wearing an olive green lightweight summer mac
by Studio by Preen from Designers at Debenhams

a navy M&S dress (similar here), Baukjen sunglasses,
a Bulgari Serpenti handbag (gifted) and last year’s Whistles bronze sandals.


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4 comments

Reply

Amazing experience! Thank you for sharing!

Reply

Thank you Holly for sharing such a compelling insight into this emotive subject. And hats off to your continuingly stoic approach. I had no idea about the change in focus the MS Society has decided to take, it seems surprisingly short term for an organisation dedicated to supporting those with this long-term Illness.

Reply

Thank you very much for your blog Holly. My dad has primary progressive MS and is now severely disabled, I often get frustrated about how much the research/literature/media attention is focused in one area. The withdrawal of funding for the respite care was really shortsighted. Thanks again for writing.

Reply

Dear Lucy

Thank you so much for writing. I agree with you whole-heartedly. I don’t want to know how[pretty young things in their twenties are coping brilliantly with MS. I WANT people to know how awful it is so they understand how much work there is to be done, how important fund-raising can be, how hard it is to live with. LLGxx

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