MS patients being harmed by bureaucratic benefits system, say specialist nurses

MS specialist nurses have spoken out about the harm they see being done to patients trying to claim disability benefits. These include Personal Independence Payment and Employment and Support Allowance.

The nurses’ views came to light when the UK’s MS Society conducted a survey. This revealed that the nurses feel significant pressure to help their patients with benefits claims. The society says that its survey found:

·        90% of nurses said they provided supporting evidence for benefits applications

·        Of those, 58% said they worked outside of working hours to provide this evidence

·        75% said providing evidence increased their workload either a moderate amount or a lot

·        83% of everyone who answered said their patients asked for help with filling in benefits applications.

Many people with MS ask their MS nurse for evidence to support their disability benefits applications. However, those nurses have say they often struggle to provide it. What’s more, it adds strain to their already overstretched workloads. The society is concerned that the process isn’t working.

This seems to be because specialist healthcare professionals are not given proper guidance on what and how evidence should be provided. This is leading to too many people with MS losing or being denied vital benefits they are entitled to receive.

System “doesn’t make sense

reassessed

Genevieve Edwards (pic: MS Society).

MS Society director of external affairs Genevieve Edwards said: “Our survey shows helping with benefits is a significant issue for MS nurses, who also see first-hand how damaging the assessment process is.

“We’re urging the government to improve the process so MS nurses can concentrate on providing the specialist care only they can deliver. Having MS is hard enough. It shouldn’t be made harder by a welfare system that doesn’t make sense.”

Johnny Dela Cruz is a MS specialist nurse at Charing Cross Hospital, in Fulham, south-west London. He said: “I see the effects of patients not being able to get benefits. One had to stop his treatment because a cut to his benefits meant he could no longer get to the hospital. So, I feel a lot of pressure to make sure I do as much as I can to help my patients. But on average I’m getting asked to do this five times a week, it’s overwhelming.”

Helen Davies, a MS specialist nurse at St Helier Hospital, in Carshalton, Surrey, said: “On average I probably see one patient a week for whom their biggest concern is their benefits application, and this will take up most of their 30-minute clinic appointment. I usually have to spend this time discussing coping strategies for the anxiety this causes them. It’s so frustrating to see patients go through this unnecessary stress and upset.”

Stress and anxiety

Joanna Smith, a MS specialist nurse in south-west London said: “We’re not given any guidance about what to put in these letters, and it’s not a simple process. All my patients going through this find it very stressful and some have told me how they’ve lost sleep over their applications, or had increased anxiety. Both stress and anxiety make MS symptoms like fatigue and pain worse.”

UK MS Specialist Nurse Association policy adviser Debbie Quinn said: “Nurses are often doing extended hours to fit this in, without it being recognised. This can impact their own family life and wellbeing, and we need to keep our nurses fit and well, so they can suitably look after others.” 

RCN head of nursing practice Wendy Preston (pic: RCN).

Royal College of Nursing head of nursing practice Wendy Preston said: “When there are only a couple of hundred nurses who specialise in MS across the country, their time becomes extra precious. They gladly help their patients to get the full range of support they require, but a bureaucratic and cumbersome benefits system helps nobody.

“Ministers and policymakers cannot ignore the experts who say it is leading to people missing out when they need help most. The system must be fit for purpose and clear guidance, education and time must be given to those who can support applications.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated. 

Changing “I can’t” to “I can” – determination is key

Determination is one of the best qualities to which we all can aspire. Whatever our disease, condition, or disability, we can all try to have more determination in our lives.

It is that quality that changes “I can’t” to “I can”. It is about making every effort in life.

Of course, I am not talking about anything that is beyond our individual capabilities.

We might not be able to walk far, if at all, but is there anything we can do to make life easier not only for ourselves but also those nearest and dearest to us.

If we can find ways to get up after a fall, without needing help, we have made a good start. But finding ways to stop falling is even better.

In my own case, my mobility has been increasingly affected over the years. In gradual stages, progressive multiple sclerosis has taken its toll.

determination

Menai Suspension Bridge, from which I abseiled in 1997.

Thirty years ago, as an adult leader in the Scouts, I was an accredited mountain walking leader, went rock climbing and enjoyed abseiling. On one occasion, for a medical charity, I abseiled from the Menai Suspension Bridge in North Wales, UK.

Twenty years ago, my difficulties in mobility had begun. Walking was a task that no longer came naturally. I was forced to think about each and every step.

Fifteen years ago, my inability to left my left leg led to a diagnosis of MS.

Ten years ago, after several falls, I started using a walking stick/cane outdoors. This minimized falls but could not prevent them. A year earlier, I had found it impossible to continue working and so tried to find ways to help move about.

Determination to be independent

First, I tried mobility scooters but these were not deal for me. You see, scooters are designed to be driven using both your hands which did not suit my left arm and hand which are so weak that I cannot even use them to eat.

While continuing to use a walking stick for short distances, up to 10 yards or so, longer distances required a wheelchair. This was the only way to avoid falls

Initially, I tried a self-propelled manual chair but soon found that I needed to have someone push me. My weak left arm/hand meant I could make great left-handed circles but going straight just wasn’t possible.

This was followed by my first electric power wheelchair. Now, this gave independence when using it, with one-handed joystick control. However, I still needed help getting it in and out of my Chrysler Voyager. My beloved Lisa still had to manhandle a folding ramp, so it wasn’t ideal. In fact, she said that she’d rather push the manual chair than fight with the ramp.

So, how could I regain some independence and not cause more work for my nearest and dearest?

new normal

The lightweight folding electric wheelchair that I use today.

The answer was surprisingly easy. I bought one of the lightweight folding electric power wheelchairs now on the market. This I can easily get into and out of the car using just one hand giving me independence to reach anywhere that has no more than a small kerb or step to overcome.

It means that now Lisa can choose to stay in our car, while I get out to run one errand or another.

For me, determination has paid off, and continues to do so. How about you?

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Bumbling, bungling government department proves it is useless

A government ministry responsible for disability benefits has just proved it really is unfit for purpose. This time, though, it is not the policymakers – this time it is the civil servants.

Unbelievably, seven months after being informed that a disabled person had died, the Department for Work and Pensions (DWP) sent a doctor to assess her fitness to work. This was in relation to her pre-existing claim for Employment and Support Allowance.

benefitsNews of the incident, including the reaction of the deceased’s daughter, was revealed in The Sun, a UK national newspaper. Journalist Andrew Parker wrote:

A FURIOUS daughter handed a benefits doctor proof her mum was not fit to work — her ashes.

Hatti Broxton, 28, told the Department for Work and Pensions last August her dinner lady mum Louise had died of lung cancer aged 47.

Hatti Broxton gave the Department for Work and Pensions concrete proof her mum Louise was unable to work – her ashes.

After initially saying the information had been placed on file they sent the doctor to assess if Louise was “fit to work”.

Fuming prison worker Hatti, of Wolverhampton, said last night: “His first words were ‘Hi, are you Louise?’

“I was stunned and said I wasn’t but invited him in and said: ‘Hang on a minute I’ll go and get her’.

“I walked over to the mantlepiece in the lounge where we keep mum’s remains in an urn decorated with a rose.”

The benefits doctor was forced to apologise after Hatti went to fetch her mum on his request and returned with an urn holding her ashes.

Ashes surprise for doc

“I handed it to him and said ‘This is the Louise Broxton you’ve come to see. She died in August like I told your office at the time.’

Hatti Broxton with her mother’s ashes and the DLA letter giving notice of the assessment visit. (Pic: Caters News Agency via The Sun).

“The doctor’s face was a picture and he just said ‘Oh my God’ and apologised profusely. “I know it wasn’t his fault but I told him I had gone through all the correct channels to report my mother’s passing and his visit was very upsetting.

“He admitted he hadn’t even been through mum’s medical records which would have said quite clearly at the end – deceased.

“Ten minutes after the doctor left I got a frantic call from the DWP office to say they had made a mistake and they wanted to hold their hands up and sincerely apologise.”

She added ‘I’d love to live in the world that the DWP live in – the one where my mum’s still alive. “But she’s been gone for seven months and something like this doesn’t make our loss any easier.”

The DWP has apologised to Hatti and is investigating the blunder.

Of course, this sad tale won’t come as a surprise to anyone involved with the UK’s disability and welfare crisis.

We know that government policies are cruel, and fail people with disabilities. What this case emphasises is that there are more things wrong than just the policies. This may be a one-off mistake but it does point to inefficiency, insensitivity, and sheer carelessness.

We are all human, we all make mistakes, but this error was inexcusable.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Junior minister suggests world ‘realities’ mean government attacks on rights are likely to continue

Any cherished hope that the government could embrace the opportunity of doing something positive for disabled people seems misplaced.

This came to light when a justice minister effectively dismissed calls for government action. That is, action to do more to protect the social and economic rights of disabled people and others.

rights

Dr Phillip Lee.

The hard truth was revealed by a junior justice minister Dr Phillip Lee, whose responsibilities include human rights. He spoke at the launch of the Equality and Human Rights Commission’s (EHRC) report on Britain’s progress in implementing the International Covenant on Economic, Social and Cultural Rights (ICESCR).

He said that “the realities of the world” – including population growth, an ageing society, and mass migration – and “finite resources” meant the government could not afford to meet the report’s call for action on the rights laid out in the covenant.

That means NO action on:

·        rights to work, including safe and healthy working conditions;

·        social security and an adequate standard of living;

·        the highest attainable standard of physical and mental health;

·        education and cultural life.

Although the ICESCR was ratified by the UK in 1976, the EHRC report says the “overall picture” with its implementation in the UK “remains deeply concerning”.  It goes on to say that the government has “failed to show why its tax, policy and legal reforms since 2010 were necessary and fair, and how they align with human rights standards”.

It also says: “Social security reforms made by successive UK Governments since 2010 have had a particularly disproportionate, cumulative impact on disabled people, resulting in a regression of their rights to independent living and to an adequate standard of living and social protection.”

Rights ‘recognised’

Disability News Service (DNS) reports that Lee said he recognised the rights laid out in the covenant and said the EHRC report provided a “timely” and “useful summary” of the commission’s views on the government’s progress in its implementation. He added that it highlighted “some key issues and certainly gives us some pause for thought”.

The clear indication that no action would be taken was when he said he wanted to “talk from the heart”.

According to DNS, he said it was “all very well talking about social and economic rights” but the world was changing “at an ever increasingly-fast pace”. This, he said, includes population growth, developments in artificial intelligence, an ageing population, and migration.

He added: “It’s all very well talking about rights… but the corresponding thing is responsibility, duty, duty to others, duty to each other, duty within the community, responsibility within communities, responsibility of our country and the world.

“Although I congratulate you on your work and recognize it’s well-motivated, I have to deal with realities of the world.”

rights

Virginia Bras-Gomes.

Virginia Bras-Gomes, chair of the UN committee on economic, social and cultural rights (UNCESCR), later told DNS that there was a “growing concern” among her committee that progress in realising those rights had “come to a standstill”.

The UK government appears to “know what the difficulties are” – including migration and an ageing population – she said, but added: “What I don’t see happening in many countries, including the UK, is that not everything is being done to use the resources the country has to deal with the difficulties.”

She said: “There is a growing defiance on the part of developed countries to say, ‘look at all the difficulties we face, we cannot go beyond what we have done already’.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

MS bodies look for NICE support for PPMS treatment

Leading MS organisations are seeking support to gain approval for ocrelizumab (Ocrevus) to treat all primary progressive MS (PPMS). It is already approved for use against early PPMS.

ocrelizumabBoth of the UK’s MS Society and MS Trust are campaigning to get the medication approved for wider use by the country’s National Health Service (NHS). And they are seeking the support of patients, carers, and health professionals in their efforts to influence the National Institute for Health and Care Excellence (NICE).

NICE is currently assessing ocrelizumab for PPMS to decide whether it should be prescribed by the NHS in England and Wales.

The MS Society said: “We’ll be telling NICE why people with both primary progressive and relapsing MS should be able to access ocrelizumab through the NHS.

“We want to hear from people who’d like to take ocrelizumab, to support our submission to NICE.

Tell what it’s like to live with PPMS

“Do you have relapsing MS and think you’d benefit from taking it? Or, if you have primary progressive MS, can you help us tell NICE what it’s like to live with, and why the first treatment option matters to you?”

To give the society your views, you are asked to send an email here.

The MS Trust says it will be explaining to NICE why it thinks ocrelizumab should be made available on the NHS.

The trust also appealed for support. It said: “To help us make a strong case, we want to hear your experiences of living with PPMS, your views on current NHS care for PPMS and your thoughts on ocrelizumab.

“We’d like to hear from you if:

        you have primary progressive MS

        you have a different type of MS, but would like to add your views

       you are a partner / friend / relative / carer of someone with PPMS

      you are a health professional providing care for people with PPMS

“Tell us what you think by completing this short questionnaire by 14 February.”

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Disability benefit review does not need sensationalist headlines

A newspaper editor once told his reporters: “Don’t worry about the facts, give me the sensation.” Sounds far-fetched, right? But, it’s true. I know as I was there, I was one of those reporters.

That editor used headlines like “Women scream as ….” to sell newspapers. He was not so much a journalist as a sensationalist. He was more interested in the bottom line of the financial accounts than the truth.

The truth, however, is crucial. It is what journalists live by, and what everyone (readers, viewers, and listeners) deserves to receive.

I was reminded of that sensationalist editor this week when various parts of the media pounced on a government decision and exploited people’s fears. In particular, it fed the fears of recipients of a key disability benefit.

It all surrounds the decision of UK works and pensions secretary Esther McVey not to challenge a court decision. Judges had decided that her ministry had acted wrongly in how it dealt with personal independence payment (PIP). I reported this decision on January 20.

 Following the decision not to challenge the court ruling, the Department for Work and Pensions (DWP) now has a duty to review the cases of certain claimants. This is to ensure that they have been given a high enough award, and to correct any it finds are wrong.

Instead, the DWP announced plans to review ALL the PIP claims. Now, I am not a fan of this government or the DWP, but I think that this is being thorough. Hopefully, it will all turn out well.

Some elements of the media have fed on the fears of some claimants that the review will mean they may face re-assessments, with all the stress they entail.

Sensationalist ‘terror’ headline

Just one headline that went straight for sensation was published on Thursday. It read: “Disabled people’s response to PIP review: STARK TERROR”. The terror was real, although caused by an uncorrected misapprehension.

You see, the DWP had already said that no disabled people will have their benefits reduced because of its decision to review 1.6 million PIP claims.

The Disability News Service reported:

sensationalist

Sarah Newton MP, minister for people with disabilities.

Sarah Newton, the minister for disabled people, announced this wee that, following McVey’s decision not to appeal the court ruling, DWP would review every one of the 1.6 million PIP claims that have been made since the benefit was introduced in 2013 to see how many had been wrongly assessed and were now entitled to backdated PIP payments.

The review will include all those previously found ineligible for the benefit after being assessed by DWP and its contractors, Atos and Capita.

The cost of implementing the court judgement is estimated to be up to £3.7 billion over the next five years.

Newton announced the review on Monday in a written answer to a question from Labour’s shadow work and pensions secretary, Debbie Abrahams.

Newton said the following day – in response to an urgent question from shadow disability minister Marsha de Cordova – that no-one would see their benefits reduced as a result of the review.

So, free of any sensationalist: YES there is a review, but NO reassessments. YES, some are likely to receive increased benefit payments, but there will be NO reductions in benefit.

If that is all true, and it seems to be, there is no cause for alarm or terror.  But, can we rely on the DWP and its ministers to speak the truth? That is another matter entirely. Only time will tell.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Fatigue makes it difficult to push on

I love writing. No surprise there, it has after all been a major part of my life. But, today, it’s not so easy because I have been hit by a bout of fatigue.

Fatigue is just one possible aspect of multiple sclerosis – but there are plenty of other causes too.

And for anyone fortunate enough not to be affected by fatigue, please don’t tell us to get a good night’s sleep. Be assured, that is not enough.

So, what is fatigue?

The medical information website healthline.com says:

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn’t the same as simply feeling drowsy or sleepy. When you’re fatigued, you have no motivation and no energy. Being sleepy may be a symptom of fatigue, but it’s not the same thing.

Fatigue is a common symptom of many medical conditions, which range in severity from mild to serious. It’s also a natural result of some lifestyle choices, such as lack of exercise or poor diet.

If your fatigue doesn’t resolve with proper rest and nutrition, or you suspect it’s caused by an underlying physical or mental health condition, see your doctor. They can help diagnose the cause of your fatigue and work with you to treat it.

Why do we get fatigue?

Causes of fatigue can be described, in general terms, as your lifestyle, and your physical or mental health.

Healthline lists lifestyle factors as physical exertion, lack of physical activity, lack of sleep, being overweight or obese, periods of emotional stress, boredom, grief, taking certain medications such as antidepressants or sedatives, using alcohol on a regular basis, using street drugs such as cocaine, consuming too much caffeine, and not eating a nutritious diet.

We know that those of us with MS can get fatigue but there are other physical conditions that can also cause it. Healthline says these include, anemia, arthritis, bromyalgia, chronic fatigue syndrome, infections such as cold and flu, Addison’s disease – a disorder that can affect your hormone levels, hypothyroidism or underactive thyroid, sleep disorders such as insomnia, autoimmune disorders including MS, congestive heart failure, cancer, diabetes, kidney disease, liver disease, chronic obstructive pulmonary disease, and emphysema.

As for mental health conditions, fatigue is a symptom of anxiety, depression, and seasonal affective disorder.

In my case, I’ll blame the MS but today the level of fatigue has been made worse by trying to do too much, too quickly.  Right now, I feel totally worn out and am having trouble keeping my eyes open.

Goodnight.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.