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Smiling sun UK MS Society's 50th Anniversary Dinner

MS Society Logo

The Jooly's Joint community speaks directly to
members of parliament

The UK MS Society celebrates its 50th Anniversary in 2003.

To mark this event, the society held a small dinner at the Marriott hotel in Westminster, London on the evening of Wednesday 26 March for a few of the key influencers in the world of MS, including 3 MPs who are officers of the All Party Parliamentary Group for MS (David Hinchcliffe MP, Gordon Prentice MP, Paul Burstow MP), the Director-General (Mike O'Donovan, whose son has MS) and the Chair of the MS Society (Sarah Phillips who has MS), the Society's medical advisor (Alan Thompson) and, of course, a number of people with MS (Val Butler, Elaine Moore and Julie Howell).

The evening took the form of a drinks reception followed by dinner and lively discussion about the state of services to people with MS in the UK.

Julie Howell of Jooly's Joint was invited to give a short speech during the dinner from the perspective of someone living with MS.

What follows is a transcript of that speech, which comprises comments from several members of our JJUK discussion group. Julie extends a big thank you to everyone who contributed to the speech and to the MS Society for inviting her to attend the dinner.

Smiling sun Jooly's speech

My name is Julie. I'm 32, I work full-time and live in London. I was diagnosed with MS in 1991, when I was 20.

I've been asked to speak to you because I have the privilege and the pleasure of facilitating an online community (called Jooly's Joint) for around 10,000 people with MS from around the world. The MS Society has asked me to pass on to you a few of the thoughts and feelings of some of us and I'm very pleased to spend a few minutes doing so now.

Our community operates over the internet, using email mostly. One of the things we encourage members of our community to do is include an inspirational quote at the end of their messages.

For example, Julia from York's quote reads 'make today the best you've ever had'.

And Joyce from the USA's reads 'look for the joy in every day'.

One my favourite sign off quotes is the one used by Dave from Swansea. It may not be the most positive sentiment, but when you consider the remark comes from someone with MS, living in the UK, trying to get on with life, well, it certainly strikes a chord. And it's this… "I thought I saw a light at the end of the tunnel but it was some bastard with a torch bringing more troubles"..!

While there are fantastic health and social care professionals working across the UK to help people with MS, people like me, to get on with our lives, experiences have been mixed. I'm one of those people who firmly believes that life can still be fantastic, rewarding, fulfilling, even with a condition like MS to contend with. Indeed, the Jooly's Joint community is all about celebrating who we are and our achievements, great and small, from skydiving or becoming mayor, to having our writings published or finishing a degree course.

The Jooly's Joint community is, on the whole, a very happy, positive and welcoming place, because it's populated on the whole by happy, positive and welcoming people. But for many of us, myself included, the diagnostic process which is the beginning of our individual journeys to coping, handling and living with MS can be the beginning of an entire chain of events that leave us feeling bewildered, ignored and undervalued.

The words I'm about to read to you aren't mine. They belong to members of the Jooly's Joint community, people with MS, who are glad of this opportunity to tell you how services to people like us might be improved.

Getting a diagnosis.

Chris from England: "What I find most stressful about the whole MS thing is lack of awareness of the condition amongst the medical profession. When I think of the years during which I repeatedly went to see doctors only to be labelled a hypochondriac when all the time I knew something was wrong with me, it me makes me so cross. It would be really helpful if professionals such as GPs and ophthalmologists were more aware of the symptoms of MS. This could make the process of diagnosis swifter. It's a lot easier coping with symptoms when you know what is causing them. An expert doctor course might be a good idea."

A common cause of additional stress at time of diagnosis is lack of information.

Lisa from Derby said "I couldn't believe that an enormous hospital like the one I attend hadn't even got so much as a leaflet in their neurology department explaining more about MS. Even better would have been the name of an allocated support worker or nurse with a phone number. I've still yet to even see an MS nurse or to receive an appointment for the MS clinic and it's getting on for 2 years since my first symptoms appeared. I will never forget the feeling of bleak isolation that overwhelmed me as I walked out of the hospital having been told I'd got MS. I was told that I have MS and that was it."

Dave from Swansea: "When I was diagnosed I received no information. The neuro said I had MS but was unable to give me any information about help or advice."

Lynne from Langley Mill: "The lack of information is dreadful. When I had my MRI scans, a bloke in a white coat came and said "You have a major swelling on your brain stem and you can go home as soon as you want". I was then packed off with an appointment to return in 2 months time. Not knowing what it meant made life so stressful. I realise now that it was probably that stress that made me so ill for so long."

Waiting lists continue to be a cause of great stress.

Lisa from Derby: "Another source of stress for me has been waiting lists, and the enormous amount of time it takes between having a test and getting the results. I had to wait nearly 3 months for the results of my MRI scan. I found this extremely stressful."

On-going practical support was cited by some to be severely lacking."

Caroline from Oxford: "It would be so reassuring if all people with MS could have a social worker assigned to them. This would help create a central register of relevant facts and needs. Best of all, it would avoid cases like mine. I lived with MS for 12 years with no idea of the help available."

Tony from England adds: "Information about physiotherapy and exercise would be helpful."

Jill from Medway says: "The needs of people who've had MS for a long time and cannot benefit from the disease modifying drugs are easily overlooked. We need support to keep fit (eg accessible swimming pools and gyms staffed with helpers), and we need support to help us feel good when we're unable to exercise (access to aromatherapy, massage and reflexology)."

Lastly, Mark from Crewe said: "I'm under 40, have primary progressive MS, and am very concerned about the lack of appropriate respite care for younger people like me."

On-going emotional support also seems to be scarcely available.

Judy from Huddersfield: "MS has a profound effect on the emotional health of a relationship. No-one has ever asked me or my husband as a couple how MS has affected our relationship. It's incredible how many people with MS that I know tell of failing relationships. Who is there for them?"

And the ability to get on with our daily lives is sometimes hampered by lack of support and awareness.

Di from England said: "I think employers should be made more aware of MS because there is still a stigma attached to the illness."

And Di also asks: "Can car insurance companies be made more aware that MS is not life threatening?"

Alan from Glenmavis: "There is a need for increased awareness of the effect that stressful events can have on people with MS. I went into a major relapse last year when I became too ill to continue working. I'm convinced the stress of filling out forms, talking to bureaucrats, dealing with having an incurable illness, trying to reassure and inform friends and family, all contrived to extend the length of the relapse and severity of the symptoms. Oh aye, and the anger felt on being told the Governemnt couldn't afford the only bloody drug that might help me."

Judy from Huddersfiled provides the final word: "Please ask the MPs and the medical profession to STOP CALLING US 'PATIENTS'! We would never dream of calling our MP 'OUR ELECTED SERVANT!'."

This is all pretty basic stuff. Timely information, access to professionals, therapy and respite when we need them. These are all things that can enable people with MS to get on with our lives, to work, to look after our families, to contribute to society. We don't want to be wrapped in cotton wool, we don't want to rely on state benefits rather than work. We just want access to information, services and support that will give us the confidence to get on with our lives and live our dreams. Thank you.

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