Apparently, today is the most depressing day of the year According to the University of Exeter, it is the combination of unpaid credit card bills, post Christmas blues and the long dark nights.
However, for many people with MS and other disabilities, there is also the ‘Welfare Reform Bill’ looming – jeapordising hard fought for benefits. Disability Living Allowance is the latest benefit to be discussed in the House of Lords today. The proposed changes include the introduction of Personal Independence Payments instead of DLA. (See here for more info http://www.disabilityalliance.org/f60.htm). You might think the changes sound reasonable or that the real intention behind these changes is to save money and make cuts. Many organisations are mounting challenges to these changes with the Disability Alliance pledging to take the government to court over this. If you feel angry, write to your MP and vent. It can make a difference www.writetothem.com
Meanwhile, the good news is that the days are getting longer and as I write this, the sun is shining quite gloriously. In this moment, that makes everything okay.
Perhaps like many people you begin to think about Christmas and all the shopping you still need to do or maybe you don’t even want to think about Christmas yet. Well at the MS Trust we begin to think about Christmas 2012!
Yes you did read that last sentence right – yesterday I spent time looking at and choosing some of our Christmas card designs for next year. ‘Why so incredibly early?’ I hear you ask (or groan!). There is a lot of hard work which goes into choosing the cards, producing the brochure and webpage and all the other tasks involved which go on behind the scenes. We feel it is important to bring you a great selection of high quality cards which you will enjoy sending to family and friends. To get everything ready in time for the 1st August and our free postage and packing offer we start the process many months before. Sales of our Christmas cards are an important source of income and help to spread awareness with each card sent, making all the hard work very worthwhile.
This year we have cute Meerkat cards as well as the more traditional designs. If you haven’t already bought your cards it’s still not too late – order them now! What cards will we have next year? You will just have to wait and see!
After disclosing my MS in a pretty unabashed fashion in a national broadsheet (The Independent) last November I thought I was done with ‘coming out’ about my disease. Then this summer a BBC researcher got in touch via the MS Society. They were recording a series for Radio 4 entitled ‘Coming Out,’ about living with and disclosing difficult truths about ourselves, they’d read the article and wondered whether I’d be interested in telling my story for their series.
It seemed a good opportunity to again raise awareness of MS, a disease I think is still little or misunderstood by the general public. In particular it was the difficulties of living as a young and relatively physically unaffected MS’er that I wanted to highlight. These days MRI technology can diagnose MS much earlier when a patient may only be experiencing mild symptoms. In your 20s and 30s when career and relationships are being built developing MS seems to call your whole future into doubt. On top of this new deep uncertainty about that most base of foundation, your health, there are serious decisions to be made about who to tell, when to tell and how to tell.
It is this decision and its consequences that the programme is focussed upon. I was aware that compared to most MS’ers I disclosed to my employer and to my friends very early. My friend Andrew had dealt with things very differently, in part because his symptoms on diagnosis were far milder than mine, and so I suggested to the BBC that it would be good to get Andrew involved too.
In the programme Andrew and I explain how we dealt with ‘coming out’. I hope it illustrates there is no single ‘right way’ to tell people about your MS and that being personally ready to do so is the most important thing. You need to be prepared to deal with others’ reactions which you can not control.
In many situations the fact of my MS seems irrelevant and I still leave my MS out of the equation for a while; the decisions about when and how to tell people continue. But I think the programme’s producer wanted its positive tone to be encouraging and helpful to those who are considering telling people about their MS for the first time. It is I hope thought-provoking for all listeners to think about why MS’ers struggle to disclose their disease and what this says about prejudice in our society.
The films I’ve been working on, featured within the programme, will be launched in early 2012 on shift.ms This beautifully written and filmed story, will raise awareness of MS and be an innovative and compelling resource for all MS’ers but especially those debating how to deal with their diagnosis and whether to ‘come out’. There is a lot more work to be done in supporting people with MS psychologically and also in ensuring they remain within the work force whilst able. Hopefully with progress in these arenas coming out for future generations of MS’ers need not be such a dilemma.
Follow Cathy John on Twitter @lickingthehoney and on Facebook Cathy John>lickingthehoney.org, or through her popular blog www.lickingthehoney.org Cathy won the MS Society Media Coverage of the Year Award 2011 and has written articles on MS for The Independent. She has recently been commissioned by the University of Northumbria to write a story evoking the uncertainty of living with MS and is an advisor on Gallop and Belong two groundbreaking films about being young and diagnosed with MS to be launched early 2012 – see www.shift.ms
This was the 15th year that the MS Trust held their Annual Conference for health and social care professionals and what a conference it was. This was the first MS Trust conference I have been to and what an eye opener it was.
As a conference newbie I was amazed by the amount of people that attended and at the scale of the operation in which the small MS Trust Education Team organise and make this huge event happen. The conference caters for around 300 health and social care professionals with seminars from some of most respected health professionals from around the world. These speakers include the likes of;
Professor Helen Tremlett (Associate Professor, UBC Hospital, Vancouver, Canada)
Dr Eli Silber (Consultant Neurologist, Kings College Hospital, London)
Professor David Miller (Professor of Clinical Neurology, UCL Institute of Neurology, London)
The aim for the conference is to help the development of health and social care professionals that work within MS. Some of the people that work within MS have reasonable size teams and some people their own – this also gives all professionals a chance to network and swap ideas and tips that work in their own services. In turn we hope it helps give a better rounded service for people with MS – and after all this is one of charitable objectives.
My role while at the conferences was to film some of the conference speakers that the MS Trust had lined up and pitch them specific questions aimed at their field of knowledge that will help people with MS. These clips range from coping with dizziness to new treatments to working with MS – these clips should be available online shortly.
As a member of the MS Trust webteam I don’t get out that often to do any actual face to face fundraising events. I have been a quite good girl and taken part in two super hero runs for the MS Trust in the past (as Catwoman and Princess Leia!) . But when I was asked to help out at a charity jumble sale in Letchworth (where both me and the MS Trust is based) I thought why not! As a person with MS myself I know how important it is to raise those funds, so the MS Trust can keep on sending out information to people who need it.
It was a rather freezing and cold October morning when my alarm woke me up, my husband and son were happily snoozing away as I got dressed and walked down to the Greenhouse indoor market. This was the first time this market held such an event so no-one knew what to expect. Down at the market two of my colleagues were waiting with loads of boxes. The MS Trust had three tables which we quickly filled up with jewellery, glassware, books, toys, games, bags, and clothes donated to us by supporters and MS Trust Staff. Oh and not forgetting a pair of Jimmy Choo shoes, size 3.5! This was our top find at the sale.
About 10 minutes before opening I went to the bathroom and when I came back people were queuing up at the gates to get in to the market! Before I could make my way over to our tables the market was flooded, people started pulling at clothes like it was a boxing day Christmas sale at Harrods! Quickly the table I was taking care of, the toys and books, started to get less and less stuff on it, so I kept on putting more things out.
People were mostly in a good mood and very friendly, some people would give some more money than we asked for, as a nice donation, some people however would haggle with you like we were a market in Morocco and not little Letchworth. But it is fair to say everyone loves a bargain, as the market was very popular indeed. A few hours later and many 50 pence’s had turned to 122 pounds and we felt very happy with our efforts.
Oh what happened to the Jimmy Choo’s I hear you ask? Well it really ended up being a Cinderella adventure, several ladies were interested as you would have expected, but when finding out how small the shoes were, they just laughed. In the end my colleague Jo approached a lady to see if she was interested in a pair of Jimmy Choo’s. “No, she said I can never find shoes my size, I got tiny feet”! “Aha”, cried all three of us and got a chair out, off came the lady’s boot, and the shoe was a perfect fit! Done and dusted, one happy customer, and three happy MS Trust Stall holders.
So would I recommend you doing something like this? YES! It was a fun few hours, we earned some money for a very good cause and I got rid of a bunch of unwanted stuff that was filling up my wardrobe. All in all a great day!
We are having an incredibly busy week here at the MS Trust, with the launch of the results of the latest MS Trust and Royal College of Physicians Audit coinciding with another sensational response to our Secret Art Show!
You might be wondering why we would combine these topics into one blog; the Audit of MS Services is, after all, a very serious topic highlighting the good and the bad in MS services across the UK. But without fundraising initiatives like the Secret Art Show and the fantastic support we receive from the general public we wouldn’t be able to fund essential audits such as these, which would leave us with little evidence to use in campaigning for high quality services for people with MS.
That’s why we are always pleased to be so busy. We have sent out 188 pieces of art this week and we hope that the buyers will be delighted with their exclusive purchases. We want to take this opportunity to thank them, and the artists who generously donated their work, for funding our work and more importantly, for helping us fight for a better deal people with MS!
Today we published the report from our third audit of services for people with MS which we carried out with the Royal College of Physicians (RCP). The audit asked purchasers (commissioners), providers (hospitals/community health centres), some GPs and of course – very importantly – users of MS services, how their experiences measured up to those set out in the NICE Guideline for managing MS. The results over all are disappointing, showing that the six basic standards set out in the guideline are not being implemented widely or consistently and there has been little improvement since 2006 when we did the first audit.
So 8 years on from the publication of the NICE guideline has there been any progress in MS services?
Let me say straight away this is not a report criticising people who work in the NHS – many people were full of praise for their MS nurse/therapist/doctor and it does show that when people are using the specialist MS centres in hospitals they can get excellent care.
The problem is that not everybody has a specialist centre within reach. Many people with pain, fatigue, mobility issues, etc are seen outside of the MS centres and their problems get lost in “the system” especially if their needs cross between the NHS and social services.
We strongly support the NICE guidelines too, they do set out the basics of what good services should look like, but without the necessary “carrots or sticks” to get them fully implemented they don’t work and we need to understand how that will change that in the future.
The aim of the report is raise awareness of the issues out there and to see that the future design of the health service takes into account the needs of people with MS who deserve better.
Walking. It’s such a significant ability, isn’t it? Being able to walk is one of the markers of development from babyhood to childhood.
And to many of the general population in our culture, it’s whether someone can walk or not that determines whether or not they’re disabled. Many of us with MS quite rightly complain that our invisible symptoms disable us just as much, if not more, than mobility problems. Even so, we often resist using mobility aids such as sticks, crutches or wheelchairs for as long as possible: visible symbols of our disabilities.
The worst symptoms of my MS are fatigue and pain. Even so, any improvement in my mobility would make my life far easier! I’m currently able to walk very short distances, and use a power wheelchair outside the house.
Fampridine is a tablet taken twice daily. It’s not like Beta Interferon, Copaxone or Tysabri – it has no effect on disease progression. It’s effective for roughly 33-40% of people with MS with walking problems: when it does work, it gives an average 25% improvement in walking speed.
Back when it was in trials, I discussed Fampridine with my neurologist. She said that she would want to put me on it as soon as it was approved.
So far, so excellent. But like every medication, Fampridine has potential side effects. Some of these are relatively minor, and pass as you get accustomed to the drug. But some are potentially very dangerous.
Among these is a slight risk of seizures (fits). Now in general, for most people, that very small chance would be a risk worth taking. But I already have epilepsy. So although it’s well controlled, anything that increases my seizure risk is not really very good news.
It’s all about swings and roundabouts: balancing risks and benefits. At the moment I don’t know if my neurologist will consider me suitable for Fampridine, given the seizure risk. I’m seeing her in 6 weeks, and will be asking about it.
But if she leaves the decision up to me, will a possible improvement in my walking be worth risking losing control of my epilepsy? If I have a seizure, I’ll lose my driving licence for a year, and I really don’t want that to happen. But easier walking would make my life so much simpler.
At the moment, I really don’t know what my decision would/will be. I suppose I’m going to have to do some hard thinking over the next few weeks. And who knows? Pretty soon, like Helen Shapiro, I might be Walking Back to Happiness!
With access to NHS prescriptions of Sativex difficult in many parts of the country, a number of people have been asking for private prescriptions. This has highlighted the issue of different pharmacies charging different prices.
Sativex is a cannabis based mouth spray licensed as an add on treatment for people with spasticity. It is sold in packs of three containers at a cost price of £375. Based on an average of eight sprays a day, each container will provide a month’s treatment.
We have been contacted by several people who have been surprised at the difference in price between pharmacies. With a private prescription, pharmacies can add a mark up to the cost price and effectively treat medicines as they would any other product they sell.
Several people have contacted the MS Trust’s Information Service to let us know the prices they have been quoted by their local pharmacies for filling their prescriptions in the last few months.
Superdrug – £375
Asda – £450
One Click – £480
Boots – £479.60
Tesco – £562.50
Lloyds – £562.50
Crossdales – £660
These prices are liable to fluctuate and this shouldn’t be read as a guide to the cost of Sativex. However, the difference illustrates that, unlike an NHS prescription, a private prescription is a commercial transaction and there is benefit in shopping around.
We had a stall at the Royston Rotary Club’s Kite Festival yesterday (Sunday) and it was a case of ‘hold on tight’ when assembling our gazebo for the day! It was a rather windy start to the day and it took 4 of us to secure it tight enough so that it wouldn’t take off and become a large kite rather than a gazebo!
Once everything was set up and securely in place we were ready for the crowds. We had a mix of Christmas cards and MS Trust merchandise on display as well as some of our publications for anybody who needed more information about MS and not forgetting some posters with information about a couple of our fundraising events.
It was a mix of sun and showers during the day and at times the weather did seem more suited to our MS Trust ducks! The rain and wind was all worth it though, as we were lucky enough to be the main charity to benefit from money raised at the event, due to Royston Rotary Club President and long term MS Trust supporter Neil Heywood.
And the gazebo? I’m pleased to report that it was still standing at the end of the day!
Recent Comments