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“I didn’t receive any information about MS when I was diagnosed. Nothing.” – Leonie’s story

21st October 2014 by Stephen

Yesterday we reported on our survey which found that only 12 per cent of people with MS felt they got all the information they needed when they were diagnosed.

The impact of this information gap can be profound. Many eople who took part in our survey told us that they felt like they had to do their own research on the internet. What they found was often overwhelming, sometimes misleading and certainly not tailored for them.

Today we hear from Leonie who tells us about the struggle she had to find information that could help her make sense of MS. In the end it took her almost two years to find an MS specialist nurse who could help her. In the meantime her health suffered, which meant problems at home and at work.

How did you find MS information when you were diagnosed? What did you find helpful and what did you find not so helpful? Let us know in the comments below or on social media, using the hashtag #mssense.

Over the coming days we’ll be sharing the experiences of more people living with MS and introducing a new information resource which we believe will help people find the right information  at the right time for them.

MS Trust survey highlights the impact of lack of information when people are diagnosed with MS

20th October 2014 by Stephen

Earlier this year the MS Trust carried out new research into the effects of information on people’s experience of MS diagnosis. We surveyed 500 people living with MS and asked them whether they had been given information when they were diagnosed, and how this had affected their adjustment to living with MS.

We received a sobering response. Only 12 per cent of people who responded to our survey said they received all the information they needed when they were diagnosed.

Only 12% of people with MS feel like they get all the information they needed when they were diagnosed

93 per cent of respondents said that they had to carry out their own research after being diagnosed. Many people told us that they had to look for answers to their questions online, and the information they found was often misleading and not relevant to their circumstances. This had the effect of leaving many people scared and despondent about their future.

93% of people with MS felt like they had to do their own research after diagnosis

72 per cent of respondents told us that they believed that they would have been less stressed if they had access to good quality information when they were diagnosed.

72% of people with MS think that information would have made diagnosis less stressful

At the MS Trust we believe that information is powerful. Over the last two years we’ve been working with people living with MS and MS specialist health professionals to develop a new resource to help people make sense of MS when they’ve just been diagnosed. Over the next couple of weeks we’ll be explaining more about why this information is needed, how we’ve developed and designed our new resource and sharing the experiences and tips of people living with MS.  We’ll also be letting you know how you can get involved and help us reach more people with MS and help them find the right information at the time that’s right for them.

 

 

 

Christmas carols in October?

17th October 2014 by Stephen

photo2 - Crop

Claire Gambrell reports on the official opening of Christmas card season at Holy Trinity Church in west London

You may wonder why anybody would be singing Christmas carols in October, but that was exactly what I was doing recently!

The reason? Every year some of us from the MS Trust fundraising team attend the official opening of the Cards for Good Causes Christmas card shop in Sloane Street, west London. This is a wonderful occasion and gives us the chance to see some of our Christmas cards on display among many other charities.

Cards for Good Causes runs temporary charity Christmas card shops in local churches, libraries, community centres, tourist information centres and museums, and sells cards on behalf of approximately 300 national and local charities.

The card shop in Sloane Street is in the Holy Trinity Church and a short service is held for everybody attending the opening. It wouldn’t be complete without singing a couple of traditional Christmas carols (although I am not sure that I will be appearing on X Factor anytime soon!).

The service was followed by the official opening of the shop by three representatives of the Chelsea Pensioners. It was wonderful to see them there, displaying many of their well deserved medals.

I look forward to this lovely occasion every year: it really kicks off the festive season for me! Cards for Good Causes do a fantastic job of raising significant funds for lots of charities, including approximately £40,000 every Christmas for the MS Trust.

We are always looking for more volunteers to help in Cards for Good Causes shops. Find out more.

To see the range of cards we have for sale online visit our Christmas shop.

A blueprint for integrating health and social care in England?

26th September 2014 by Nicola Pates

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new report recommending more joined up working between health and social care in England, and considers what it might mean for people with MS

A new settlement for health and social care: final report is the unassuming title of a King’s Fund document that is trying to identify a solution to the gap between health care and social care that currently exists within England. Known as the Barker Commission – because of its chair, Dame Kate Barker CBE – this document has no legal force.  However, King’s Fund reports can be very influential so this report’s recommendations may have an effect on the different political parties’ plans for health and social care in the run up to the next general election, due May 2015.

The report makes 12 recommendations, many of which are concerned with funding any potential new system:

  1. A new settlement is needed for health and social care in England that breaks down the historic divide between the two systems and provides a much simpler path through the current maze of health and social care
  2. England needs to move to a single, ring-fenced budget for health and social care, with a single commissioner
  3. We recommend that work be undertaken to explore whether and/or how the health and wellbeing boards could evolve into the single commissioner for our new settlement.
  4. A much simpler path through the whole system of health and social care should be designed to reflect changing levels of need
  5. There should be more equal support for equal need. In the long run that means making much more social care free at the point of use
  6. We do not recommend any changes to NHS charges (except for rationalising accommodation costs outside hospital, and reducing the prescription charge)
  7. The government should plan on the assumption that public spending on health and social care will reach between 11 per cent and 12 per cent of GDP by 2025. This will involve some significant tax increases.
  8. The older generation, and those approaching state pension age, will be among the biggest beneficiaries of our new settlement, and we recommend, on the grounds of inter-generational fairness and equity, that they should make a significant contribution to the additional costs involved in our recommendations (phasing out free TV licences and winter fuel payments, NI to continue at a reduced rate if you work past state pension age)
  9. Our recommendations for much more social care to be free at the point of use will have to be phased in. As that happens we recommend an additional 1 percentage point employees’ National Insurance contribution for those aged over 40 as a contribution towards the more generous settlement from which they and their parents will benefit
  10. We recommend an increase to 3 per cent in the additional rate of National Insurance for those above the upper earnings limit, again timed to match the extensions of free social care
  11. With a view to raising additional revenue, we recommend a comprehensive review of wealth taxation to include possible reforms to inheritance tax, a wealth transfer tax, changes to capital gains and property taxation
  12. Given the changing evidence base as the population ages and medical advances continue, we recommend that the government adopt the recommendation of the Wanless review of 2002 and institute a regular review of the health and social care needs of the country and the spending required to meet them

It is difficult to see any political party swallowing all the funding recommendations made by the Commission.  There have also been criticisms that the Commission did not take into account the existing funding crisis within the NHS, which may adversely affect its figures.  On the whole, though, any attempt to look at joining up the whole system, and to look at funding social care well enough that it can be free at the point of use for many people, is welcome.

Working towards care of the whole person: investing in mental health

24th September 2014 by Shan Teo

Alice Hamilton, the MS Trust’s Policy Officer, looks at a new report on public mental health services and considers what It might mean for people with MS

‘Mental health’ always sounds remarkably scary. In fact, it’s a misleading umbrella term that covers a whole range of things from needing psychological support in coming to terms with an event or diagnosis, through anxiety and depression, right through to very severe conditions.
Mental ill-health can form a part of people’s experience of MS, and particularly common in MS are are anxiety and depression. MS is unusual in that these symptoms may be a reaction to the diagnosis of MS, but they may also be symptoms caused by the condition. But did you know – I didn’t – that these symptoms occur to a greater extent in people with any long-term condition, not just MS.

Knowing this may make you feel better, or worse: like so many MS symptoms, treating anxiety and depression is possible, but accessing suitable treatment may be difficult. And it seems that difficulties in accessing suitable treatment are not confined to MS, a subject that the Chief Medical Officer of the NHS in England has this year chosen to focus on. Her evaluative report on the current state of mental health services in England, Public mental health priorities: investing in the evidence, provides a comprehensive overview of the current state of mental health services, and mostly comments on the woeful inadequacies of the system in sorting these out at the moment.

The report makes 14 recommendations to improve services, but buried within the 340 pages of text are some important observations that don’t make it to the recommendations. Some that seem more pertinent to many people with MS include:

  • mental health services are exempt from the 18-week maximum waiting time for services stipulated in the NHS Constitution http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx This results in very long waits for services such as counselling
  • people with long-term health conditions are two to three times more likely to experience mental health problems than the general population, yet the majority of cases of depression among people with physical illnesses go untreated
  • people with ‘common mental disorders’ (eg anxiety and depression) are more likely to live in low-income households, to be single parents, not to be in work, and to experience fuel poverty. [We know that all of these issues affect some people with MS.]
  • it’s not just the person with the condition: full or part-time carers are more prone to common mental disorders, partly because of the difficult emotions and broken nights that may arise from the caring role, and partly because of the results of the caring role, such as difficulties with finances, work, housing, and possibilities to get out and about
  • mental health care accounts for only 13% of NHS spending while being responsible for 28% of all morbidity in England. [If you add to this the woeful underspend in England on neurological services, the upshot is likely to be very poor support for people with MS]
  • mental ill-health is both a cause of unemployment (ie may cause you to lose your job) and a result of it (ie people who are not in work are more likely to have poor mental health). [We know work is a huge issue for people with MS.]
  • there are structural problems in improving provision of psychological support in general hospitals, even though everyone recognises that better provision of these services often results in shorter hospital stays and in reduced hospital admissions

All in all, the CMO’s collection of evidence paints a gloomy picture. To address some of these issues, the report makes 14 recommendations from the evidence collected. Possibly the two most relevant to MS are Recommendation 6, which is that whether an individual is employed needs to be a routine part of patient records, as employment is central to mental health; and recommendation 14, recommends developing waiting times standards for access across mental health services.

We know, from what you tell us, that getting help such as counselling is next to impossible. We can only hope that the Chief Medical Officer’s report may spur NHS England to take this issue on and start to tackle some of the historical issues that create such difficulties in services.

Top Tips for Travel Insurance: a guest blog from our insurance partner Unique

19th September 2014 by Nicola Pates

A guest blog from our insurance partner Unique explains some of the pitfalls to avoid when buying travel insurance.

Sun, Sea, Sand and Insurance

When holidays are on our minds, we search websites for deals, gaze into travel agents’ windows, flick through brochures in search of that dream getaway to escape it all for a while.

Once we’ve booked we can focus on the packing – sandals, swimwear, sun cream, travel insurance documents, all the things we shouldn’t leave home without!

Why do I need travel insurance anyway?

None of us knows what could be around the corner, and if something were to happen we want to be safe in the knowledge that we are covered for any eventuality. Travel insurance can provide cover for you in the event of unexpected incidents that can spoil your holiday, such as flight delays, loss of luggage, or theft of possessions. But the biggest benefit is the medical cover it provides and that is why it is so important to select travel insurance that covers your MS.

I have an EHIC card, that covers me doesn’t it?

An EHIC card will allow you to access state-provided healthcare in all European Economic Area (EEA) countries and Switzerland. There are restrictions as to what is covered and your EHIC might not cover everything that may be included in your insurance. For example, it will not cover you for the costs of returning home early should your medical condition require it.

It’s not worth the risk of heading on holiday without travel insurance in place – particularly if you have pre-existing medical conditions or disabilities.

When searching for travel insurance, you should look closely at what is being provided. Does the policy cover MS, and all medical conditions, disabilities, allergies, everything declared, or are there exclusions to this?

Travel insurance is certainly an area where understanding the cover provided is key, since the next person’s needs may be very different to your own.

Honesty is the best policy and cheaper doesn’t mean better!

In this life, you get what you pay for and the cheapest price isn’t necessarily the best value. Disclosing medical conditions, even those that are managed day to day, may change the price of your insurance, but will give you the comfort that your conditions are covered.

And travel insurance is one cost not to cut corners on – it could turn out to be an expensive gamble!

Failure to declare a medical condition may be more complicated than you think. For example, if you had a fall and injured yourself on holiday, medical professionals may decide that the incident and necessary treatment could be caused by and/or linked to your undisclosed condition. In turn, insurers may then decide that your whole travel insurance policy is void. As well as this example, anything you haven’t declared may be discovered during further investigations, leading to non-payment of claims – a nightmare scenario that would not lead to happy holiday memories.

Cheap prices from some providers can look very attractive, but remember to check their policy wording and all the details to make sure that they would include all medical conditions, and without offering to include them for an additional ‘top up’ price. Unique will check and double check with you that everything is declared – and never offer to exclude anything. We are also there for the long term, if there are any changes in your medical conditions and individual needs. We would love to save you money at the same time, but if paying a bit more equals peace of mind, isn’t that a price worth paying?

Who are Unique?

Unique has an established partnership with the Multiple Sclerosis Trust, giving you access to a  travel insurance policy that covers people living with MS and any other medical conditions and disabilities, their families and friends travelling with them, and supporters of the MS Trust. It’s important to remember a few things when considering your travel policy choice…

We are not a ‘one size fits all’ service; we look at individual circumstances, your destination, and how long you’re away for before providing your quotation. Also, we offer two levels of cover to vary what you need for medical, cancellation and baggage cover.

We don’t have an upper age limit on any travel insurance policies.

Should anything unexpected happen when you are away, our assistance and claims contacts work with you closely and quickly to ensure you get the help and support that you need, with a worldwide network that has a proven track record. A 24/7 multi-lingual medical emergency service is available.

Most importantly of all, cover for the whole travelling party can be provided, so should anything happen, you would be able to travel home together.  Not guaranteed by other providers and yet most of us assume it would be.

As well as all of that, for every Travel policy sold, Unique donates a third of the commission that it retains from that sale to the Multiple Sclerosis Trust.

For more information or a no obligation quotation, please call the Unique team on 0800 519 0748, email mstrust@ajg.com or visit the MS Trust travel insurance page for more information.

Please refer to policy wording for full terms and conditions.

Multiple Sclerosis Trust is an Introducer Appointed Representative of Heath Lambert Limited. Unique is a trading name of Heath Lambert Limited, which is authorised and regulated by the Financial Conduct Authority. Registered Office: The Walbrook Building, 25 Walbrook, London EC4N 8AW. Registered in England and Wales. Company Number: 1199129.

The financial costs of MS

16th September 2014 by Nicola Pates

Do you know how much more having a diagnosis of MS has cost you financially?

I don’t, but at a guess I would say that your car insurance and travel insurance have gone up and that it’s difficult and expensive to get life insurance and a mortgage.  Not to mention the hours spent on the telephone and with the forms, and getting medical reports to submit with the forms if you need them.

Then there are all the other day-to-day costs of MS, which can certainly mount up.  These are things like prescription charges, hospital and GP surgery car parking charges, costs of specialised equipment if you need it.  Specialised equipment need not be exotic: I’m thinking of things like smartphone apps to help keep track of your MS, or fans to help you keep cool.  Would you need these if you didn’t have MS?  And then there are the financial deals you miss out on – for instance, does the need to plan around your MS mean that you can’t take advantage of cheap deals on things like travel, theatre tickets or restaurants, because they are only available at short notice or at strange hours?

We know that all of these things have an impact on your financial situation. Unfortunately, as a small charity, we don’t have the resources to campaign about the financial impact of MS but SCOPE, the disability charity, does.  In July they launched their Extra Costs commission which is running for a year and looking at the extra financial costs that people with a long term condition or disability face.

SCOPE are specifically requesting individual accounts of your experiences of extra costs that are incurred because of your MS, and of how these costs affect you and your financial situation.  Have these costs led to financial hardship?  Does it make it harder to make ends meet?   Please don’t let the fact that SCOPE label this as ‘disability’ put you off – this is an opportunity for people with MS to explain just how financially expensive having MS is, along with being emotionally, physically and mentally hard.

I cannot stress how important it is that all aspects of the costs involved in MS are exposed within this report, and that can only happen if you submit your personal experiences. SCOPE needs to hear about the extra costs you face, but also about their effect on your whole financial situation. There is an online form here which is really simple to use and which allows you to say as much or as little as you like, in your own words so that you can focus on what matters most to you.

The closing date for submissions is Friday 26th September 2014. 

Alice, Policy Officer

Getting ready to ride to the Alps

15th September 2014 by laura.percival

Paul Markham and Barry Jordan

Paul Markham and two friends will be cycling from London to Courchevel this month to raise funds for the MS Trust. Paul tells us here why he has chosen to take on this challenge.

I work in the ski industry for a company called Supertravel and spend some of each winter in the Alps. I’ve been talking about riding my bike from London to Courchevel in the French Alps for charity for about four years now, but each year things didn’t quite work out. It’s the company’s 50th birthday this winter so it kind of made sense for us to aim for this year.

I’ve managed to talk two others, Fred Wakefield and Barry Jordan, into the ride and we have two support drivers, Clive and Christine Chappe. We are going to ride the 650 miles in nine days ending in an HC (super category) climb to Courchevel 1850 which they have used in the Tour de France – basically a steep mountain that lasts 15 miles!

We were looking for a charity to support that meant something to us, something that we knew would help. I remember my dad telling me that he had bumped into a school friend of mine and that he was shocked to find out that she had MS. We connected through facebook a while later and I have kept up with her blog over recent years. It was difficult taking in how the condition had affected the girl who used to live on my street, the girl who used to run around my parents’ garden.

I think it’s made us realise that the challenge we will have riding the nine days is small compared to the challenges that people with MS face each day. So at the moment whilst we are dealing with sore legs and a sore bum, that’s our motivation to keep going. We’ve been doing rides of up to 85 miles, including a couple of rides in the Alps. Putting in nine days of that kind of distance is going to be the hard part, but what would be the fun if it was easy?!

Visit Paul’s fundraising page

Photo L to R: Paul Markham and Barry Jordan

Three talking points from day two of the Boston MS conference

12th September 2014 by Stephen

In her third post from MS Boston 2014, Amy Bowen reports on the highlights from day two

Amy Bowen, Director of Service Development, MS TrustAnother day at MS Boston 2014. We heard that there are nearly 9,000 delegates from 90 countries attending the conference, which gives you an idea of the scale of this event. There was a fantastic presentation by a Danish group called Sailing Sclerosis. This is a group of people with MS who are sailing around the world and have just crossed the North Atlantic, arriving here in Boston just in time for the conference. The whole crew came to the conference and received a standing ovation from a packed hall. They showed a film of their Atlantic crossing which was really inspiring.

Thursday’s programme had much more scientific content, with findings from trials being presented in a constant stream in sessions running in parallel throughout the day. There were also some big announcements, but more of that later.

Big learning for me from the day:

  1. Some really great sessions on current thinking about disease modifying therapies. Overwhelmingly, neurologists recognise that decisions need to be personalised. There are clinical factors about the current important measures of disease activity, such as relapses, changes on MRI, sustained signs of disability and changes in brain volume. These help guide clinical assessment but are not enough on their own. The preferences of people with MS must play a big part in treatment decisions. This is partly about weighing up how effective each treatment is compared with the possible side-effects. It is also about how individuals feel about risk. Without a doubt, having information about treatments that can be compared is becoming more and more important.
  2. Lots of discussion about stem cells. Results of some promising studies and more work underway, but this is a new frontier and there are a lot of issues to be addressed. There was a strong message for people with MS to be extremely cautious about stem cell therapies which are offered outside of clinical trials. The risks are significant and serious.
  3. The Progressive MS Research Alliance announced its first research grants. This is a fantastic development for people with progressive MS. Though research takes time to deliver benefits, without it there can’t be progress in improving understanding of what causes and drives neurodegeneration in progressive disease or understanding of what therapies can help maintain function. These initiatives also help to continue to raise the profile of people with secondary progressive MS and primary progressive MS and of the importance of rehabilitation services.

That’s it for today.

Amy

Three things I learned from day one of the Boston MS conference

11th September 2014 by Stephen

In the second of her posts from MS Boston 2014, MS Trust Director of Service Development, Amy Bowen, reports on the hot topics from Day One.

Amy Bowen, Director of Service Development, MS TrustIt’s the end of day one at MS Boston 2014. The event is truly massive and there is an enormous amount to see and take in. Much of the focus of the day was on clinical teaching and on new researchers presenting their projects. I learned a huge amount but these are the three big three things I took away from today.

  1. There’s a lot of talk about early treatment of relapsing remitting MS with disease modifying drugs. Neurologists are thinking about the strength of the evidence for early treatment as opposed to a more gradual ‘watch-and-wait’ approach. They are also discussing the risks and benefits of more ‘aggressive’ treatment. How important is it to try and reduce or eliminate all signs of what the neurologists refer to as “disease activity” – not just the visible signs (such as relapses and increase in disability), but also changes which can only be seen on MRI scans?  What impact does this approach have on short and longer-term outcomes? This is going to become a bigger focus  for neurologists, and people with MS will need the right information to help them have better discussions with their care team about their treatment options and choices.
  2. In all types of MS, cognition is a big issue. Researchers and clinicians are focusing on one of the most important and often invisible problems that people with MS experience. About half of people with MS  may have problems with memory and information processing. This has a massive impact on their daily life, and is a major factor in people staying in work. I heard that even though cognitive problems often lead to the decision to leave employment, the main reason that people with MS disclose their diagnosis to their employer is to do with physical problems such as walking. Cognition is a hidden issue and there is clearly a recognition that clinicians need to focus much more on asking people with MS about cognitive problems and offer support to manage them. There are now quicker and more accurate ways of assessing cognition, and different techniques for addressing cognitive problems. Clinical trials for new disease modifying treatments for all types of MS  are starting to measure their effect on cognition rather than just how they affect walking or physical disability.
  3. Exercise helps! I heard a lot of talk and saw a lot of evidence about the value of exercise for everyone with MS at all stages of the condition. Activity helps physically, psychologically and perhaps even with cognitive problems. Exercise programmes are really important and fit well with a general approach to MS care which gives more control to the individual. This is going to be a big, big issue.

That’s all for today. More from me tomorrow.

Amy