Tag Archives: access

Feel the beat: deaf fans fight for access to live music

Growing up among the reggae soundsystems and pirate radio stations of 1980s Hackney, Troi Lee was surrounded by music, “speakers on the street corners blaring”. After getting a Walkman for his 14th birthday, he would wander through his neighbourhood playing songs by Public Enemy on repeat: “It was pure joy,” he says. This passion led Lee to follow in the footsteps of his cousin John and become a DJ. It’s a common enough path – except that Lee was born severely deaf.

Deaf Rave founder Troi Lee.
Deaf Rave founder Troi Lee. Photograph: Vaya Media

With his hearing aids on the telecoil setting, he could hear certain frequencies of his Walkman – the bass vibrations from the percussion and glimpses of lyrics – through a magnetic wireless signal. When DJing, Lee, now 44, uses digital software to visualise the instrumental elements that he mixes together. “We need to reverse the myth that deaf people can’t enjoy music,” Lee says. “I don’t let my deafness affect me. I want to show the world that deaf people can play music just as well as our hearing peers.”

The idea that deafness impedes the appreciation of music is gradually being debunked. In 2013, sign language interpreter Amber Galloway Gallego went viral in the US for her animated performance for rapper Kendrick Lamar at the Lollapalooza festival. Rather than merely signing the words, she embodies musical textures with her face and movements, showcasing a unique technique that she describes as “showing the density of sounds visually”. To represent bass, she places her arms in front of the lower part of her body and inflates her face, replicating the sign for “fat”, while higher frequencies are placed at head height and above. After her performance, US talk show host Jimmy Kimmel took notice, inviting her and fellow interpreters Holly Maniatty and JoAnn Benfield on his show for a “sign language rap battle” in 2014.

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Amber Galloway Gallego signing for Kendrick Lamar at Lollapalooza festival, 2013 – video

Despite some progress, a report by accessibility charity Attitude Is Everything recently stated that in the UK over 80% of deaf and disabled music fans have experienced problems when booking tickets to live music events. The UK’s live music census in February also found that only 30% of surveyed venues have dedicated disabled-access areas and only 7% of surveyed promoters have a policy to provide PA (personal assistant for deaf and disabled customers) tickets as standard. Yet it’s estimated that more than 3.3m deaf and disabled fans attend live music events every year, with a 70% rise in disabled-access ticket sales reported in 2016.

With one in six people suffering from hearing loss in the UK and around one in 1,000 children born profoundly deaf, the lack of accessibility to live music for deaf people is a significant challenge, and deaf fans believe too little is being done to serve their needs. “I don’t go to live shows very often as they’re not that accessible,” says writer Rebecca Withey, who is profoundly deaf. “There is absolutely not enough provision for us, and ironically when some venues do host accessible shows, they don’t promote them well enough for us to find out about them.”

For some fans, difficulties around access can put an end to nights out altogether. “Being ignored by the music industry has made me disengage from live music,” says deaf journalist and film-maker Charlie Swinbourne. Fans say specialist provisions are crucial: interpreting should be as readily available in the UK as it appears to be in the US, says student Liam O’Dell, while Lee believes that “all promoters should allocate a certain number of tickets for deaf and disabled people”.

Clubbers at Troi Lee’s Deaf Rave night.


Clubbers at Troi Lee’s Deaf Rave night. Photograph: Vaya Media

Small steps are being made towards inclusivity: festivals such as Glastonbury and Festival Republic events Reading, Leeds and Latitude all provide BSL interpreting on request. Still, the provision can face obstacles. “When access is permitted it is often done so reluctantly – it is not widely advertised, left unregulated and is often of an inadequate standard,” says Marie Pascall, director of Performance Interpreting, which provides the service for Festival Republic. She describes one instance where “an act refused to have the interpreter on stage, and then refused for the interpreter to sign any of their performance”.

Troi Lee has taken matters into his own hands. In 2003 he founded Deaf Rave, a quarterly event in London designed specifically for deaf clubbers. The inspiration came from his experiences at illegal warehouse parties in the early 1990s, where the speakers amplified the vibrations he had once enjoyed through his Walkman. “It’s something I can’t quite describe,” he says, “the lasers blazing up the place and the biggest soundsystems I have ever seen or felt, shaking the entire warehouse.” From that moment in 1991, he set out to convince the deaf community that clubbing was as much a part of their culture as the hearing world’s. Through heightened bass levels and the use of new technology such as SubPac – a wearable speaker that intensifies vibrations – Lee can make his events immersive.

The organisation celebrates its 15th anniversary this year, but Lee says there is still much to be done. Deaf people are twice as likely to suffer from depression as hearing people. Withey says: “There’s still a huge stigma attached to being a deaf music fan.” Says Lee: “We are one of the most marginalised groups in society, owing to our isolation, unemployment, lack of BSL in mainstream schools and the daily frustrations of communication barriers. We organised Deaf Rave because we have empathy for our community.”

Brexit could leave patients unable to access new drugs

NHS may only get newly developed medicines a year after other EU countries, report warns

The European Medicines Agency building in London


The loss of membership of the European Medicines Agency could affect the UK’s ability to access drugs, said the report. Photograph: Frank Augstein/AP

Patients could face long delays obtaining new drugs or be denied access to them altogether as a result of Brexit, a coalition of doctors, NHS bosses and pharmaceutical firms warns.

The NHS may find itself unable to access newly developed medications for up to a year compared with the other 27 EU nations once Britain leaves in March next year, they said on Monday.

Patients could lose out unless the government makes continued UK-EU cooperation on the supply of drugs a key priority in the second phase of Brexit negotiations and avoids a “no-deal” exit, according to a report from the Brexit Health Alliance.

The BHA includes the Academy of Medical Royal Colleges, which represents the UK’s 250,000 doctors; leading health charities; the NHS Confederation and NHS Providers, both of which lobby on behalf of NHS hospital trusts; and the Association of the British Pharmaceutical Industry, the trade body for the country’s drug developers and manufacturers.

“The UK’s plans to leave the European Union and the EU’s single market could have serious implications for patients’ access to medicines and medical technologies,” the report warns. Patients in both the UK and EU27 could suffer negative impacts from “the disruption in trade that could result from the UK’s exit from the EU, as well as in the event of lack of cooperation in the regulation of medicines and devices between the EU and the UK post-Brexit”.

It outlines a series of problems which could affect the UK’s ability to access drugs as a result of its loss of membership of the European Medicines Agency (EMA), a body of experts which approves all new pharmaceutical products so they can be given to patients in the EU. It is moving its headquarters and 900 staff from Canary Wharf in London to Amsterdam as part of Brexit.

“Potential disruption” to the supply of drugs in which the licences are held by EU countries could lead to the UK having to devise a new system for approving 978 drugs which have been authorised by the EMA since 1995, the alliance believes.

“It’s vital that the health of patients is prioritised in the second phase of negotiations. If not, patients in the UK and the EU could face delays in accessing potentially life-saving treatments,” said Aisling Burnand, chief executive of the Association of Medical Research Charities.

Despite having several bilateral trade agreements with the EU, Switzerland starts receiving new drugs an estimated 157 days after its members. Similarly, Canada and Australia often get new drugs between six and 12 months later than in the EU or United States. That is because drug companies target their new products at the largest market. While the countries covered by the EMA represent 25% of the world’s overall pharmaceutical sales, the UK accounts for only 3% of it.

The Office of Health Economics recently said that, after Brexit, 5-15% of marketing applications to use drugs in the UK could be submitted more than a year after the EU27, and that, based on Switzerland, Canada and Australia’s experiences, some medications may never come to the UK.

Sick children and patients with rare diseases could suffer in particular if Britain is no longer part of Europe-wide arrangements to promote the development of drugs for both groups, the BHA added.

“There are many aspects of the NHS that could be hit hard if a Brexit deal does not make the right arrangements, or if it is executed badly. As well as disruption to the availability of medicines, problems with customs and trade could push up prices and make the already large NHS deficit worse,” said Mark Dayan, a policy analyst at the Nuffield Trust health thinktank.

The Department of Health and Social Care rejected the BHA’s concerns. “We are committed to ensuring patients in the UK continue to access the best and most innovative medicines. Patient safety is our priority, and we will protect it through ongoing cooperation and a strong regulatory framework,” a spokesman said.

NHS waiting times and treatment access are a postcode lottery, report warns

Waiting times and access to treatments on the NHS involving medical technology are little short of a postcode lottery with dramatic variations across the country, a new report has revealed.

The study found wide disparities between the performance of NHS England clinical commissioning groups (CCGs) for patient waiting times and referral rates across a host of different treatments, including hip and knee replacements and cataract surgery.

“Whilst the ambition is to deliver world class healthcare wherever you are, the reality is that many patients in different parts of the country will receive very different treatment,” the report by non profit organisation the Medical Technology Group (MTG) warns.

Those in the east and south-east face the poorest service, the report revealed, with CCGs in these regions featuring among the worst performers for both 18-week waiting times between referral and treatment, and the lowest overall rates of procedures carried out.

CCG graphic 2

“The surprise was a clear north-south divide. In 2017 this shouldn’t be happening. Everyone should have equal access to what they need,” said Barbara Harpham, chair of the MTG.

The issue of waiting times has long been contentious, with NHS England’s chief executive, Simon Stevens, criticised earlier this year by the Royal College of Surgeons of England for relaxing the requirement that 92% of patients are treated within 18 weeks of being referred by their GP.

The new report throws the issue into the spotlight, looking at the differences between the 209 CCGs that were operating in England at the start of the year. In particular, the authors focused on waiting times and access to procedures relating to medical technology such as those involving scans, pacemakers, stents and joint replacements.

Based on data from the NHS’s database on 18-week referral to treatment times, the team found that nine of the 10 CCGs with the poorest record were in the south of England (east, south west, London and south east), while six of the 10 best performing CCGs were in the north. Looking specifically at cardiology, CCG performances ranged from achieving the 18-week target 100% of the time to meeting it just 68% of the time.

Worst at meeting the 18-week target when all procedures were taken into account was NHS Isle of Wight.

The team add that overall, about 90% of 18-week wait targets are now met by the NHS – a drop from the peak of almost 95% in autumn 2012.

Looking at rates of referrals for procedures across areas including colonoscopies, cataract surgery and stroke using a further series of NHS datasets, the team found that the poorest performing CCGs overall were largely in London and the south and east, including NHS Camden, Slough, Richmond and Southampton. More specifically, the rate of hip replacements was found to vary from almost 208 per 100,000 people in NHS Kernow to just under 55 per 100,000 in Westminster.

While the results did not take into account population size or demographics, Harpham said such factors were unlikely to completely account for the disparities. “It doesn’t appear to be just about populations – it appears to be about individual CCGs’ choices of how they spend their money,” she said.

The latest report is not the first to flag the wide disparities that exist across the country. A recently released report from the health charity the King’s Fund threw up myriad variations in everything from management to outcomes, while a study from the Universities of York and Manchester has highlighted a widening north-south divide in mortality rates among younger adults. Research published last week revealed a growing health gap between the rich and the poor.

The authors of the new report write that austerity measures are leading many CCGs to limit access to treatments. Among their recommendations, the authors argue for a user-friendly website featuring waiting times, with CCGs missing the 18-week target75% of the time in any area forced to publicise the fact on their website.

Luigi Siciliani, an expert in health economics from the University of York who was not involved in the study, said he was not surprised by the disparities, adding that the decline in waiting times seen since the early 2000s has recently stalled and started to increase. But waiting times cannot be assessed in isolation, he warned.

“A hospital providing high quality care may have a good reputation and attract more patients, which may translate into a longer wait,” he said. “But some hospitals may have both low quality and long waits, and those should be subject to tighter scrutiny.”

Julie Wood, chief executive of NHS Clinical Commissioners, said waiting times were only one measure of the quality of care and that commissioners were facing increased demand and financial pressures.

“Commissioners have finite funds allocated to them and the simple truth is that they can only spend their budgets once,” she said. “This means they are having to make increasingly hard decisions to make sure that they provide the patients and the populations they serve with the best possible healthcare within the overall resources they have.”

But an NHS England spokesman pushed back against the report, stressing that over-treatment is as much of an issue as under-treatment. “Although this report by companies seeking to sell products to the NHS is largely a rehash of old and previously published data, the NHS RightCare programme is helping local areas identify which treatment differences are linked to local need, and which aren’t,” he said.

NHS waiting times and treatment access are a postcode lottery, report warns

Waiting times and access to treatments on the NHS involving medical technology are little short of a postcode lottery with dramatic variations across the country, a new report has revealed.

The study found wide disparities between the performance of NHS England clinical commissioning groups (CCGs) for patient waiting times and referral rates across a host of different treatments, including hip and knee replacements and cataract surgery.

“Whilst the ambition is to deliver world class healthcare wherever you are, the reality is that many patients in different parts of the country will receive very different treatment,” the report by non profit organisation the Medical Technology Group (MTG) warns.

Those in the east and south-east face the poorest service, the report revealed, with CCGs in these regions featuring among the worst performers for both 18-week waiting times between referral and treatment, and the lowest overall rates of procedures carried out.

CCG graphic 2

“The surprise was a clear north-south divide. In 2017 this shouldn’t be happening. Everyone should have equal access to what they need,” said Barbara Harpham, chair of the MTG.

The issue of waiting times has long been contentious, with NHS England’s chief executive, Simon Stevens, criticised earlier this year by the Royal College of Surgeons of England for relaxing the requirement that 92% of patients are treated within 18 weeks of being referred by their GP.

The new report throws the issue into the spotlight, looking at the differences between the 209 CCGs that were operating in England at the start of the year. In particular, the authors focused on waiting times and access to procedures relating to medical technology such as those involving scans, pacemakers, stents and joint replacements.

Based on data from the NHS’s database on 18-week referral to treatment times, the team found that nine of the 10 CCGs with the poorest record were in the south of England (east, south west, London and south east), while six of the 10 best performing CCGs were in the north. Looking specifically at cardiology, CCG performances ranged from achieving the 18-week target 100% of the time to meeting it just 68% of the time.

Worst at meeting the 18-week target when all procedures were taken into account was NHS Isle of Wight.

The team add that overall, about 90% of 18-week wait targets are now met by the NHS – a drop from the peak of almost 95% in autumn 2012.

Looking at rates of referrals for procedures across areas including colonoscopies, cataract surgery and stroke using a further series of NHS datasets, the team found that the poorest performing CCGs overall were largely in London and the south and east, including NHS Camden, Slough, Richmond and Southampton. More specifically, the rate of hip replacements was found to vary from almost 208 per 100,000 people in NHS Kernow to just under 55 per 100,000 in Westminster.

While the results did not take into account population size or demographics, Harpham said such factors were unlikely to completely account for the disparities. “It doesn’t appear to be just about populations – it appears to be about individual CCGs’ choices of how they spend their money,” she said.

The latest report is not the first to flag the wide disparities that exist across the country. A recently released report from the health charity the King’s Fund threw up myriad variations in everything from management to outcomes, while a study from the Universities of York and Manchester has highlighted a widening north-south divide in mortality rates among younger adults. Research published last week revealed a growing health gap between the rich and the poor.

The authors of the new report write that austerity measures are leading many CCGs to limit access to treatments. Among their recommendations, the authors argue for a user-friendly website featuring waiting times, with CCGs missing the 18-week target75% of the time in any area forced to publicise the fact on their website.

Luigi Siciliani, an expert in health economics from the University of York who was not involved in the study, said he was not surprised by the disparities, adding that the decline in waiting times seen since the early 2000s has recently stalled and started to increase. But waiting times cannot be assessed in isolation, he warned.

“A hospital providing high quality care may have a good reputation and attract more patients, which may translate into a longer wait,” he said. “But some hospitals may have both low quality and long waits, and those should be subject to tighter scrutiny.”

Julie Wood, chief executive of NHS Clinical Commissioners, said waiting times were only one measure of the quality of care and that commissioners were facing increased demand and financial pressures.

“Commissioners have finite funds allocated to them and the simple truth is that they can only spend their budgets once,” she said. “This means they are having to make increasingly hard decisions to make sure that they provide the patients and the populations they serve with the best possible healthcare within the overall resources they have.”

But an NHS England spokesman pushed back against the report, stressing that over-treatment is as much of an issue as under-treatment. “Although this report by companies seeking to sell products to the NHS is largely a rehash of old and previously published data, the NHS RightCare programme is helping local areas identify which treatment differences are linked to local need, and which aren’t,” he said.

NHS waiting times and treatment access are a postcode lottery, report warns

Waiting times and access to treatments on the NHS involving medical technology are little short of a postcode lottery with dramatic variations across the country, a new report has revealed.

The study found wide disparities between the performance of NHS England clinical commissioning groups (CCGs) for patient waiting times and referral rates across a host of different treatments, including hip and knee replacements and cataract surgery.

“Whilst the ambition is to deliver world class healthcare wherever you are, the reality is that many patients in different parts of the country will receive very different treatment,” the report by non profit organisation the Medical Technology Group (MTG) warns.

Those in the east and south-east face the poorest service, the report revealed, with CCGs in these regions featuring among the worst performers for both 18-week waiting times between referral and treatment, and the lowest overall rates of procedures carried out.

CCG graphic 2

“The surprise was a clear north-south divide. In 2017 this shouldn’t be happening. Everyone should have equal access to what they need,” said Barbara Harpham, chair of the MTG.

The issue of waiting times has long been contentious, with NHS England’s chief executive, Simon Stevens, criticised earlier this year by the Royal College of Surgeons of England for relaxing the requirement that 92% of patients are treated within 18 weeks of being referred by their GP.

The new report throws the issue into the spotlight, looking at the differences between the 209 CCGs that were operating in England at the start of the year. In particular, the authors focused on waiting times and access to procedures relating to medical technology such as those involving scans, pacemakers, stents and joint replacements.

Based on data from the NHS’s database on 18-week referral to treatment times, the team found that nine of the 10 CCGs with the poorest record were in the south of England (east, south west, London and south east), while six of the 10 best performing CCGs were in the north. Looking specifically at cardiology, CCG performances ranged from achieving the 18-week target 100% of the time to meeting it just 68% of the time.

Worst at meeting the 18-week target when all procedures were taken into account was NHS Isle of Wight.

The team add that overall, about 90% of 18-week wait targets are now met by the NHS – a drop from the peak of almost 95% in autumn 2012.

Looking at rates of referrals for procedures across areas including colonoscopies, cataract surgery and stroke using a further series of NHS datasets, the team found that the poorest performing CCGs overall were largely in London and the south and east, including NHS Camden, Slough, Richmond and Southampton. More specifically, the rate of hip replacements was found to vary from almost 208 per 100,000 people in NHS Kernow to just under 55 per 100,000 in Westminster.

While the results did not take into account population size or demographics, Harpham said such factors were unlikely to completely account for the disparities. “It doesn’t appear to be just about populations – it appears to be about individual CCGs’ choices of how they spend their money,” she said.

The latest report is not the first to flag the wide disparities that exist across the country. A recently released report from the health charity the King’s Fund threw up myriad variations in everything from management to outcomes, while a study from the Universities of York and Manchester has highlighted a widening north-south divide in mortality rates among younger adults. Research published last week revealed a growing health gap between the rich and the poor.

The authors of the new report write that austerity measures are leading many CCGs to limit access to treatments. Among their recommendations, the authors argue for a user-friendly website featuring waiting times, with CCGs missing the 18-week target75% of the time in any area forced to publicise the fact on their website.

Luigi Siciliani, an expert in health economics from the University of York who was not involved in the study, said he was not surprised by the disparities, adding that the decline in waiting times seen since the early 2000s has recently stalled and started to increase. But waiting times cannot be assessed in isolation, he warned.

“A hospital providing high quality care may have a good reputation and attract more patients, which may translate into a longer wait,” he said. “But some hospitals may have both low quality and long waits, and those should be subject to tighter scrutiny.”

Julie Wood, chief executive of NHS Clinical Commissioners, said waiting times were only one measure of the quality of care and that commissioners were facing increased demand and financial pressures.

“Commissioners have finite funds allocated to them and the simple truth is that they can only spend their budgets once,” she said. “This means they are having to make increasingly hard decisions to make sure that they provide the patients and the populations they serve with the best possible healthcare within the overall resources they have.”

But an NHS England spokesman pushed back against the report, stressing that over-treatment is as much of an issue as under-treatment. “Although this report by companies seeking to sell products to the NHS is largely a rehash of old and previously published data, the NHS RightCare programme is helping local areas identify which treatment differences are linked to local need, and which aren’t,” he said.

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

Although the condition is regarded as relatively rare and public awareness of it is low, recent innovations in treating and assessing MS are creating a fresh focus on the disease. Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients? These were among the questions explored by a panel of experts.

What is MS?

MS is a lifelong neurological condition that affects the central nervous system and involves damage to the coating around the nerve fibres. Symptoms, varying in severity from mild or remitting to debilitating, include difficulties with walking, balance, vision and speech. In its most chronic form, MS can cause blindness and severe disabilities.

While there is no known cure, the past 20 years has seen a shift from no available treatments to the creation of drug modifying therapies (DMTs) to help control symptoms in some types of the condition. Dr Klaus Schmierer, reader in clinical neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: “MS treatment has really taken off and been revolutionised. We need to pick up that pace.”

There are three types of MS. About 85% of people diagnosed have relapsing-remitting MS (RRMS), with episodes of new or increasing symptoms that worsen then improve over time. About 65% of people with RRMS may develop secondary progressive MS, involving fewer or no relapses but increased disability. The remaining 10-15% of people are diagnosed with primary progressive MS PPMS, which involves worsening symptoms that build up over years without remission.

Recently, the first licensed drug treatment for people with PPMS was approved in the US. The drug, which can slow the rate of progressive MS, is under review by the European Medicines Agency.

Diagnosis, referral and the problem of delays

GPs are the gatekeepers to diagnosis: they cannot diagnose themselves but can refer patients with suspected MS to a neurologist who confirms or rules out the condition. However, the variable symptoms in all types of MS make it a challenge for GPs to decide on when to refer. Debbie Quinn, policy adviser to the UK MS Specialist Nurse Association, said: “GPs are in a very difficult position – where is that threshold? Because some symptoms will come and go for a few years. A lot of the time symptoms will appear like a trapped nerve.”

George Pepper, who was diagnosed with RRMS at 22 and is co-founder of social network Shift MS, said his diagnosis was relatively fast due to his serious symptoms. “I had some discomfort in my shoulder – I didn’t put it down to neurological symptoms. It persisted and, understandably, the GP put it down to a trapped nerve.”

When Pepper developed eyesight problems a few weeks later, the GP knew he had optic neuritis – inflammation of the optic nerve that is associated with MS. That, said Pepper, “was a red flag to my GP”. Attendees also heard that the shortage of neurologists undermines diagnosis rates. Not all hospitals have neurology departments, or magnetic resonance imaging (MRI), which is one of the main methods of diagnosing MS.

“We are still quite short of neurologists. When you look at the current distribution, it is something like one neurologist in 100,000 of the population,” said Schmierer, adding that the UK compares badly to the rest of Europe, which has one neurologist per 25,000 people.

MS Society research showed that 39% of patients wait more than a year to be diagnosed. Dr Jeremy Hobart, consultant neurologist at Plymouth Hospitals NHS Trust said: “There’s a delay in the condition being recognised; a delay in referral to a neurologist; a delay in seeing a neurologist and in the timing of investigations, and in the reporting of those investigations.”

Dr Ann Robinson, a north London GP, suggested diagnosis might be quicker if GPs used the urgent referral system currently in place for patients suspected of having cancer. This would mean patients being referred to a neurologist within two weeks, rather than waiting, in some cases, more than a year. However, Robinson acknowledged that funding constraints make this difficult: “There are no resources or political will to fund a two-week wait.”

Unpopular drugs

Another challenge in MS treatment is the relatively low takeup of available drug therapies. The UK, according to the Association of British Neurologists, is ranked 25 out of 27 European countries for the number of people with the relapsing form of MS who use DMTs. MS Society interim director of research Susan Kohlhaas said: “When people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”

Hobart suggested lowering the investigation threshold to drive up rates of diagnosis: “We have to lower the threshold for investigation … to pick up those who do have the disease.”

However, lower thresholds would be costly, warned London GP Dr Kate Adams. Referring to the fact that MRI scans can cost upwards of £130, she said that while GPs do not limit referrals, “there’s only so much money in the health system”.

Dr Raju Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, said increased costs caused by speeding up diagnosis could be offset by improved health as people stay in work for longer. He said: “We’re getting into health economics – if you remove the lag, we will save money.”

Another approach to improving diagnosis, said Kapoor, is better contact between GPs and the neurologists to whom they refer patients. Kapoor said: “It’s rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” Adams regularly contacts specialists directly, and in Plymouth, said Hobart, GPs directly contact radiologists specialising in the central nervous system to discuss MRI.

Could testing be simpler?

Future strategies, said Peer Baneke, MS International Federation chief executive, could involve spending on new diagnostic tools, such as blood tests. Blood tests are currently used to rule out conditions similar to MS, but Baneke said: “Is it realistic to expect at some stage you could have a different marker for MS that would give an indication of the diagnosis?”

Attendees discussed off-label prescribing options – using medicines outside the terms of their licence if based on evidence and in patients’ best interests. However, as Kapoor said, “the fact we’ve been so rigid has meant we’ve not exposed our patients to a lot of potentially toxic drugs”.

Might the new NHS online system to manage high-cost drugs, Blueteq, result in drug therapies being rationed? No, according to Kapoor: “It’s about what’s on the label, so if a patient says ‘I want a high-cost, high-potency drug’ but they can’t have it, this isn’t based on it being high cost, it’s because the drug isn’t licensed for that particular situation.”

Attendees agreed that treatment decisions should be made jointly by patients and professionals. Pepper said his severe symptoms drove him to immediately consider “the top shelf” of drug therapy. However, he described the patient experience as “hugely variable”. He raised concerns that members of the social network for MS that he founded, Shift MS, may shun available treatment because they are not adequately informed. “I see a lot in our community talking of opting out of treatment – they just don’t particularly want to have treatment,” he said, adding: “I don’t think the implications of that decision are made clear – it’s hugely important to engage people with MS to empower themselves as early s as possible.”

Many around the table echoed Hobart’s optimism that “in relapsing forms of the condition, we can alter the natural history”. In addition, said Kapoor, new developments on the horizon for the progressive form of MS, mean “we are in a better place to control the disease”. The consensus, Robinson concluded, was that treatment must be more efficient – regardless of the type of MS. “Anything that makes access to neurologists and care of patients better is going to impact on people living with MS.”

At the table

David Brindle (chair) Public services editor, the Guardian

Dr Kate Adams GP and Guardian contributor

Susan Kohlhaas Interim director of research, MS Society

Debbie Quinn Policy adviser, UK MS Specialist Nurse Association

Dr Jeremy Hobart Consultant neurologist Plymouth Hospitals, NHS Trust

Dr Raju Kapoor Consultant neurologist, National Hospital for Neurology and Neurosurgery

Dr Ann Robinson GP and Guardian contributor

Peer Baneke Chief executive, MS International Federation

George Pepper Co-founder, Shift MS

Dr Klaus Schmierer Consultant neurologist, Barts Health NHS Trust

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

Although the condition is regarded as relatively rare and public awareness of it is low, recent innovations in treating and assessing MS are creating a fresh focus on the disease. Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients? These were among the questions explored by a panel of experts.

What is MS?

MS is a lifelong neurological condition that affects the central nervous system and involves damage to the coating around the nerve fibres. Symptoms, varying in severity from mild or remitting to debilitating, include difficulties with walking, balance, vision and speech. In its most chronic form, MS can cause blindness and severe disabilities.

While there is no known cure, the past 20 years has seen a shift from no available treatments to the creation of drug modifying therapies (DMTs) to help control symptoms in some types of the condition. Dr Klaus Schmierer, reader in clinical neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: “MS treatment has really taken off and been revolutionised. We need to pick up that pace.”

There are three types of MS. About 85% of people diagnosed have relapsing-remitting MS (RRMS), with episodes of new or increasing symptoms that worsen then improve over time. About 65% of people with RRMS may develop secondary progressive MS, involving fewer or no relapses but increased disability. The remaining 10-15% of people are diagnosed with primary progressive MS PPMS, which involves worsening symptoms that build up over years without remission.

Recently, the first licensed drug treatment for people with PPMS was approved in the US. The drug, which can slow the rate of progressive MS, is under review by the European Medicines Agency.

Diagnosis, referral and the problem of delays

GPs are the gatekeepers to diagnosis: they cannot diagnose themselves but can refer patients with suspected MS to a neurologist who confirms or rules out the condition. However, the variable symptoms in all types of MS make it a challenge for GPs to decide on when to refer. Debbie Quinn, policy adviser to the UK MS Specialist Nurse Association, said: “GPs are in a very difficult position – where is that threshold? Because some symptoms will come and go for a few years. A lot of the time symptoms will appear like a trapped nerve.”

George Pepper, who was diagnosed with RRMS at 22 and is co-founder of social network Shift MS, said his diagnosis was relatively fast due to his serious symptoms. “I had some discomfort in my shoulder – I didn’t put it down to neurological symptoms. It persisted and, understandably, the GP put it down to a trapped nerve.”

When Pepper developed eyesight problems a few weeks later, the GP knew he had optic neuritis – inflammation of the optic nerve that is associated with MS. That, said Pepper, “was a red flag to my GP”. Attendees also heard that the shortage of neurologists undermines diagnosis rates. Not all hospitals have neurology departments, or magnetic resonance imaging (MRI), which is one of the main methods of diagnosing MS.

“We are still quite short of neurologists. When you look at the current distribution, it is something like one neurologist in 100,000 of the population,” said Schmierer, adding that the UK compares badly to the rest of Europe, which has one neurologist per 25,000 people.

MS Society research showed that 39% of patients wait more than a year to be diagnosed. Dr Jeremy Hobart, consultant neurologist at Plymouth Hospitals NHS Trust said: “There’s a delay in the condition being recognised; a delay in referral to a neurologist; a delay in seeing a neurologist and in the timing of investigations, and in the reporting of those investigations.”

Dr Ann Robinson, a north London GP, suggested diagnosis might be quicker if GPs used the urgent referral system currently in place for patients suspected of having cancer. This would mean patients being referred to a neurologist within two weeks, rather than waiting, in some cases, more than a year. However, Robinson acknowledged that funding constraints make this difficult: “There are no resources or political will to fund a two-week wait.”

Unpopular drugs

Another challenge in MS treatment is the relatively low takeup of available drug therapies. The UK, according to the Association of British Neurologists, is ranked 25 out of 27 European countries for the number of people with the relapsing form of MS who use DMTs. MS Society interim director of research Susan Kohlhaas said: “When people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”

Hobart suggested lowering the investigation threshold to drive up rates of diagnosis: “We have to lower the threshold for investigation … to pick up those who do have the disease.”

However, lower thresholds would be costly, warned London GP Dr Kate Adams. Referring to the fact that MRI scans can cost upwards of £130, she said that while GPs do not limit referrals, “there’s only so much money in the health system”.

Dr Raju Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, said increased costs caused by speeding up diagnosis could be offset by improved health as people stay in work for longer. He said: “We’re getting into health economics – if you remove the lag, we will save money.”

Another approach to improving diagnosis, said Kapoor, is better contact between GPs and the neurologists to whom they refer patients. Kapoor said: “It’s rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” Adams regularly contacts specialists directly, and in Plymouth, said Hobart, GPs directly contact radiologists specialising in the central nervous system to discuss MRI.

Could testing be simpler?

Future strategies, said Peer Baneke, MS International Federation chief executive, could involve spending on new diagnostic tools, such as blood tests. Blood tests are currently used to rule out conditions similar to MS, but Baneke said: “Is it realistic to expect at some stage you could have a different marker for MS that would give an indication of the diagnosis?”

Attendees discussed off-label prescribing options – using medicines outside the terms of their licence if based on evidence and in patients’ best interests. However, as Kapoor said, “the fact we’ve been so rigid has meant we’ve not exposed our patients to a lot of potentially toxic drugs”.

Might the new NHS online system to manage high-cost drugs, Blueteq, result in drug therapies being rationed? No, according to Kapoor: “It’s about what’s on the label, so if a patient says ‘I want a high-cost, high-potency drug’ but they can’t have it, this isn’t based on it being high cost, it’s because the drug isn’t licensed for that particular situation.”

Attendees agreed that treatment decisions should be made jointly by patients and professionals. Pepper said his severe symptoms drove him to immediately consider “the top shelf” of drug therapy. However, he described the patient experience as “hugely variable”. He raised concerns that members of the social network for MS that he founded, Shift MS, may shun available treatment because they are not adequately informed. “I see a lot in our community talking of opting out of treatment – they just don’t particularly want to have treatment,” he said, adding: “I don’t think the implications of that decision are made clear – it’s hugely important to engage people with MS to empower themselves as early s as possible.”

Many around the table echoed Hobart’s optimism that “in relapsing forms of the condition, we can alter the natural history”. In addition, said Kapoor, new developments on the horizon for the progressive form of MS, mean “we are in a better place to control the disease”. The consensus, Robinson concluded, was that treatment must be more efficient – regardless of the type of MS. “Anything that makes access to neurologists and care of patients better is going to impact on people living with MS.”

At the table

David Brindle (chair) Public services editor, the Guardian

Dr Kate Adams GP and Guardian contributor

Susan Kohlhaas Interim director of research, MS Society

Debbie Quinn Policy adviser, UK MS Specialist Nurse Association

Dr Jeremy Hobart Consultant neurologist Plymouth Hospitals, NHS Trust

Dr Raju Kapoor Consultant neurologist, National Hospital for Neurology and Neurosurgery

Dr Ann Robinson GP and Guardian contributor

Peer Baneke Chief executive, MS International Federation

George Pepper Co-founder, Shift MS

Dr Klaus Schmierer Consultant neurologist, Barts Health NHS Trust

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

Although the condition is regarded as relatively rare and public awareness of it is low, recent innovations in treating and assessing MS are creating a fresh focus on the disease. Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients? These were among the questions explored by a panel of experts.

What is MS?

MS is a lifelong neurological condition that affects the central nervous system and involves damage to the coating around the nerve fibres. Symptoms, varying in severity from mild or remitting to debilitating, include difficulties with walking, balance, vision and speech. In its most chronic form, MS can cause blindness and severe disabilities.

While there is no known cure, the past 20 years has seen a shift from no available treatments to the creation of drug modifying therapies (DMTs) to help control symptoms in some types of the condition. Dr Klaus Schmierer, reader in clinical neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: “MS treatment has really taken off and been revolutionised. We need to pick up that pace.”

There are three types of MS. About 85% of people diagnosed have relapsing-remitting MS (RRMS), with episodes of new or increasing symptoms that worsen then improve over time. About 65% of people with RRMS may develop secondary progressive MS, involving fewer or no relapses but increased disability. The remaining 10-15% of people are diagnosed with primary progressive MS PPMS, which involves worsening symptoms that build up over years without remission.

Recently, the first licensed drug treatment for people with PPMS was approved in the US. The drug, which can slow the rate of progressive MS, is under review by the European Medicines Agency.

Diagnosis, referral and the problem of delays

GPs are the gatekeepers to diagnosis: they cannot diagnose themselves but can refer patients with suspected MS to a neurologist who confirms or rules out the condition. However, the variable symptoms in all types of MS make it a challenge for GPs to decide on when to refer. Debbie Quinn, policy adviser to the UK MS Specialist Nurse Association, said: “GPs are in a very difficult position – where is that threshold? Because some symptoms will come and go for a few years. A lot of the time symptoms will appear like a trapped nerve.”

George Pepper, who was diagnosed with RRMS at 22 and is co-founder of social network Shift MS, said his diagnosis was relatively fast due to his serious symptoms. “I had some discomfort in my shoulder – I didn’t put it down to neurological symptoms. It persisted and, understandably, the GP put it down to a trapped nerve.”

When Pepper developed eyesight problems a few weeks later, the GP knew he had optic neuritis – inflammation of the optic nerve that is associated with MS. That, said Pepper, “was a red flag to my GP”. Attendees also heard that the shortage of neurologists undermines diagnosis rates. Not all hospitals have neurology departments, or magnetic resonance imaging (MRI), which is one of the main methods of diagnosing MS.

“We are still quite short of neurologists. When you look at the current distribution, it is something like one neurologist in 100,000 of the population,” said Schmierer, adding that the UK compares badly to the rest of Europe, which has one neurologist per 25,000 people.

MS Society research showed that 39% of patients wait more than a year to be diagnosed. Dr Jeremy Hobart, consultant neurologist at Plymouth Hospitals NHS Trust said: “There’s a delay in the condition being recognised; a delay in referral to a neurologist; a delay in seeing a neurologist and in the timing of investigations, and in the reporting of those investigations.”

Dr Ann Robinson, a north London GP, suggested diagnosis might be quicker if GPs used the urgent referral system currently in place for patients suspected of having cancer. This would mean patients being referred to a neurologist within two weeks, rather than waiting, in some cases, more than a year. However, Robinson acknowledged that funding constraints make this difficult: “There are no resources or political will to fund a two-week wait.”

Unpopular drugs

Another challenge in MS treatment is the relatively low takeup of available drug therapies. The UK, according to the Association of British Neurologists, is ranked 25 out of 27 European countries for the number of people with the relapsing form of MS who use DMTs. MS Society interim director of research Susan Kohlhaas said: “When people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”

Hobart suggested lowering the investigation threshold to drive up rates of diagnosis: “We have to lower the threshold for investigation … to pick up those who do have the disease.”

However, lower thresholds would be costly, warned London GP Dr Kate Adams. Referring to the fact that MRI scans can cost upwards of £130, she said that while GPs do not limit referrals, “there’s only so much money in the health system”.

Dr Raju Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, said increased costs caused by speeding up diagnosis could be offset by improved health as people stay in work for longer. He said: “We’re getting into health economics – if you remove the lag, we will save money.”

Another approach to improving diagnosis, said Kapoor, is better contact between GPs and the neurologists to whom they refer patients. Kapoor said: “It’s rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” Adams regularly contacts specialists directly, and in Plymouth, said Hobart, GPs directly contact radiologists specialising in the central nervous system to discuss MRI.

Could testing be simpler?

Future strategies, said Peer Baneke, MS International Federation chief executive, could involve spending on new diagnostic tools, such as blood tests. Blood tests are currently used to rule out conditions similar to MS, but Baneke said: “Is it realistic to expect at some stage you could have a different marker for MS that would give an indication of the diagnosis?”

Attendees discussed off-label prescribing options – using medicines outside the terms of their licence if based on evidence and in patients’ best interests. However, as Kapoor said, “the fact we’ve been so rigid has meant we’ve not exposed our patients to a lot of potentially toxic drugs”.

Might the new NHS online system to manage high-cost drugs, Blueteq, result in drug therapies being rationed? No, according to Kapoor: “It’s about what’s on the label, so if a patient says ‘I want a high-cost, high-potency drug’ but they can’t have it, this isn’t based on it being high cost, it’s because the drug isn’t licensed for that particular situation.”

Attendees agreed that treatment decisions should be made jointly by patients and professionals. Pepper said his severe symptoms drove him to immediately consider “the top shelf” of drug therapy. However, he described the patient experience as “hugely variable”. He raised concerns that members of the social network for MS that he founded, Shift MS, may shun available treatment because they are not adequately informed. “I see a lot in our community talking of opting out of treatment – they just don’t particularly want to have treatment,” he said, adding: “I don’t think the implications of that decision are made clear – it’s hugely important to engage people with MS to empower themselves as early s as possible.”

Many around the table echoed Hobart’s optimism that “in relapsing forms of the condition, we can alter the natural history”. In addition, said Kapoor, new developments on the horizon for the progressive form of MS, mean “we are in a better place to control the disease”. The consensus, Robinson concluded, was that treatment must be more efficient – regardless of the type of MS. “Anything that makes access to neurologists and care of patients better is going to impact on people living with MS.”

At the table

David Brindle (chair) Public services editor, the Guardian

Dr Kate Adams GP and Guardian contributor

Susan Kohlhaas Interim director of research, MS Society

Debbie Quinn Policy adviser, UK MS Specialist Nurse Association

Dr Jeremy Hobart Consultant neurologist Plymouth Hospitals, NHS Trust

Dr Raju Kapoor Consultant neurologist, National Hospital for Neurology and Neurosurgery

Dr Ann Robinson GP and Guardian contributor

Peer Baneke Chief executive, MS International Federation

George Pepper Co-founder, Shift MS

Dr Klaus Schmierer Consultant neurologist, Barts Health NHS Trust

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

Although the condition is regarded as relatively rare and public awareness of it is low, recent innovations in treating and assessing MS are creating a fresh focus on the disease. Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients? These were among the questions explored by a panel of experts.

What is MS?

MS is a lifelong neurological condition that affects the central nervous system and involves damage to the coating around the nerve fibres. Symptoms, varying in severity from mild or remitting to debilitating, include difficulties with walking, balance, vision and speech. In its most chronic form, MS can cause blindness and severe disabilities.

While there is no known cure, the past 20 years has seen a shift from no available treatments to the creation of drug modifying therapies (DMTs) to help control symptoms in some types of the condition. Dr Klaus Schmierer, reader in clinical neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: “MS treatment has really taken off and been revolutionised. We need to pick up that pace.”

There are three types of MS. About 85% of people diagnosed have relapsing-remitting MS (RRMS), with episodes of new or increasing symptoms that worsen then improve over time. About 65% of people with RRMS may develop secondary progressive MS, involving fewer or no relapses but increased disability. The remaining 10-15% of people are diagnosed with primary progressive MS PPMS, which involves worsening symptoms that build up over years without remission.

Recently, the first licensed drug treatment for people with PPMS was approved in the US. The drug, which can slow the rate of progressive MS, is under review by the European Medicines Agency.

Diagnosis, referral and the problem of delays

GPs are the gatekeepers to diagnosis: they cannot diagnose themselves but can refer patients with suspected MS to a neurologist who confirms or rules out the condition. However, the variable symptoms in all types of MS make it a challenge for GPs to decide on when to refer. Debbie Quinn, policy adviser to the UK MS Specialist Nurse Association, said: “GPs are in a very difficult position – where is that threshold? Because some symptoms will come and go for a few years. A lot of the time symptoms will appear like a trapped nerve.”

George Pepper, who was diagnosed with RRMS at 22 and is co-founder of social network Shift MS, said his diagnosis was relatively fast due to his serious symptoms. “I had some discomfort in my shoulder – I didn’t put it down to neurological symptoms. It persisted and, understandably, the GP put it down to a trapped nerve.”

When Pepper developed eyesight problems a few weeks later, the GP knew he had optic neuritis – inflammation of the optic nerve that is associated with MS. That, said Pepper, “was a red flag to my GP”. Attendees also heard that the shortage of neurologists undermines diagnosis rates. Not all hospitals have neurology departments, or magnetic resonance imaging (MRI), which is one of the main methods of diagnosing MS.

“We are still quite short of neurologists. When you look at the current distribution, it is something like one neurologist in 100,000 of the population,” said Schmierer, adding that the UK compares badly to the rest of Europe, which has one neurologist per 25,000 people.

MS Society research showed that 39% of patients wait more than a year to be diagnosed. Dr Jeremy Hobart, consultant neurologist at Plymouth Hospitals NHS Trust said: “There’s a delay in the condition being recognised; a delay in referral to a neurologist; a delay in seeing a neurologist and in the timing of investigations, and in the reporting of those investigations.”

Dr Ann Robinson, a north London GP, suggested diagnosis might be quicker if GPs used the urgent referral system currently in place for patients suspected of having cancer. This would mean patients being referred to a neurologist within two weeks, rather than waiting, in some cases, more than a year. However, Robinson acknowledged that funding constraints make this difficult: “There are no resources or political will to fund a two-week wait.”

Unpopular drugs

Another challenge in MS treatment is the relatively low takeup of available drug therapies. The UK, according to the Association of British Neurologists, is ranked 25 out of 27 European countries for the number of people with the relapsing form of MS who use DMTs. MS Society interim director of research Susan Kohlhaas said: “When people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”

Hobart suggested lowering the investigation threshold to drive up rates of diagnosis: “We have to lower the threshold for investigation … to pick up those who do have the disease.”

However, lower thresholds would be costly, warned London GP Dr Kate Adams. Referring to the fact that MRI scans can cost upwards of £130, she said that while GPs do not limit referrals, “there’s only so much money in the health system”.

Dr Raju Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, said increased costs caused by speeding up diagnosis could be offset by improved health as people stay in work for longer. He said: “We’re getting into health economics – if you remove the lag, we will save money.”

Another approach to improving diagnosis, said Kapoor, is better contact between GPs and the neurologists to whom they refer patients. Kapoor said: “It’s rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” Adams regularly contacts specialists directly, and in Plymouth, said Hobart, GPs directly contact radiologists specialising in the central nervous system to discuss MRI.

Could testing be simpler?

Future strategies, said Peer Baneke, MS International Federation chief executive, could involve spending on new diagnostic tools, such as blood tests. Blood tests are currently used to rule out conditions similar to MS, but Baneke said: “Is it realistic to expect at some stage you could have a different marker for MS that would give an indication of the diagnosis?”

Attendees discussed off-label prescribing options – using medicines outside the terms of their licence if based on evidence and in patients’ best interests. However, as Kapoor said, “the fact we’ve been so rigid has meant we’ve not exposed our patients to a lot of potentially toxic drugs”.

Might the new NHS online system to manage high-cost drugs, Blueteq, result in drug therapies being rationed? No, according to Kapoor: “It’s about what’s on the label, so if a patient says ‘I want a high-cost, high-potency drug’ but they can’t have it, this isn’t based on it being high cost, it’s because the drug isn’t licensed for that particular situation.”

Attendees agreed that treatment decisions should be made jointly by patients and professionals. Pepper said his severe symptoms drove him to immediately consider “the top shelf” of drug therapy. However, he described the patient experience as “hugely variable”. He raised concerns that members of the social network for MS that he founded, Shift MS, may shun available treatment because they are not adequately informed. “I see a lot in our community talking of opting out of treatment – they just don’t particularly want to have treatment,” he said, adding: “I don’t think the implications of that decision are made clear – it’s hugely important to engage people with MS to empower themselves as early s as possible.”

Many around the table echoed Hobart’s optimism that “in relapsing forms of the condition, we can alter the natural history”. In addition, said Kapoor, new developments on the horizon for the progressive form of MS, mean “we are in a better place to control the disease”. The consensus, Robinson concluded, was that treatment must be more efficient – regardless of the type of MS. “Anything that makes access to neurologists and care of patients better is going to impact on people living with MS.”

At the table

David Brindle (chair) Public services editor, the Guardian

Dr Kate Adams GP and Guardian contributor

Susan Kohlhaas Interim director of research, MS Society

Debbie Quinn Policy adviser, UK MS Specialist Nurse Association

Dr Jeremy Hobart Consultant neurologist Plymouth Hospitals, NHS Trust

Dr Raju Kapoor Consultant neurologist, National Hospital for Neurology and Neurosurgery

Dr Ann Robinson GP and Guardian contributor

Peer Baneke Chief executive, MS International Federation

George Pepper Co-founder, Shift MS

Dr Klaus Schmierer Consultant neurologist, Barts Health NHS Trust

MS treatments: life-changing, but hard to access

More than 100,000 people in the UK have multiple sclerosis (MS), the most common cause of serious physical disability in working age adults, according to the MS guidelines set out by the National Institute for Health and Care Excellence.

Although the condition is regarded as relatively rare and public awareness of it is low, recent innovations in treating and assessing MS are creating a fresh focus on the disease. Research suggests, for example, that MRI scans – already used in diagnosis – may be useful in predicting how MS will progress. In addition, a new drug therapy just approved in the US offers help for symptoms in the most chronic form of the condition. But, given that the drug has yet to be licensed in Europe, can the UK keep up with the latest innovations in the treatment of MS?

This was the backdrop to a recent roundtable discussion, supported by biotech company Sanofi Genzyme. Are the tools for assessing MS fit for purpose? How can early diagnosis and treatment be sped up? What matters to patients? These were among the questions explored by a panel of experts.

What is MS?

MS is a lifelong neurological condition that affects the central nervous system and involves damage to the coating around the nerve fibres. Symptoms, varying in severity from mild or remitting to debilitating, include difficulties with walking, balance, vision and speech. In its most chronic form, MS can cause blindness and severe disabilities.

While there is no known cure, the past 20 years has seen a shift from no available treatments to the creation of drug modifying therapies (DMTs) to help control symptoms in some types of the condition. Dr Klaus Schmierer, reader in clinical neurology at Queen Mary University of London and consultant neurologist at Barts Health NHS Trust, said: “MS treatment has really taken off and been revolutionised. We need to pick up that pace.”

There are three types of MS. About 85% of people diagnosed have relapsing-remitting MS (RRMS), with episodes of new or increasing symptoms that worsen then improve over time. About 65% of people with RRMS may develop secondary progressive MS, involving fewer or no relapses but increased disability. The remaining 10-15% of people are diagnosed with primary progressive MS PPMS, which involves worsening symptoms that build up over years without remission.

Recently, the first licensed drug treatment for people with PPMS was approved in the US. The drug, which can slow the rate of progressive MS, is under review by the European Medicines Agency.

Diagnosis, referral and the problem of delays

GPs are the gatekeepers to diagnosis: they cannot diagnose themselves but can refer patients with suspected MS to a neurologist who confirms or rules out the condition. However, the variable symptoms in all types of MS make it a challenge for GPs to decide on when to refer. Debbie Quinn, policy adviser to the UK MS Specialist Nurse Association, said: “GPs are in a very difficult position – where is that threshold? Because some symptoms will come and go for a few years. A lot of the time symptoms will appear like a trapped nerve.”

George Pepper, who was diagnosed with RRMS at 22 and is co-founder of social network Shift MS, said his diagnosis was relatively fast due to his serious symptoms. “I had some discomfort in my shoulder – I didn’t put it down to neurological symptoms. It persisted and, understandably, the GP put it down to a trapped nerve.”

When Pepper developed eyesight problems a few weeks later, the GP knew he had optic neuritis – inflammation of the optic nerve that is associated with MS. That, said Pepper, “was a red flag to my GP”. Attendees also heard that the shortage of neurologists undermines diagnosis rates. Not all hospitals have neurology departments, or magnetic resonance imaging (MRI), which is one of the main methods of diagnosing MS.

“We are still quite short of neurologists. When you look at the current distribution, it is something like one neurologist in 100,000 of the population,” said Schmierer, adding that the UK compares badly to the rest of Europe, which has one neurologist per 25,000 people.

MS Society research showed that 39% of patients wait more than a year to be diagnosed. Dr Jeremy Hobart, consultant neurologist at Plymouth Hospitals NHS Trust said: “There’s a delay in the condition being recognised; a delay in referral to a neurologist; a delay in seeing a neurologist and in the timing of investigations, and in the reporting of those investigations.”

Dr Ann Robinson, a north London GP, suggested diagnosis might be quicker if GPs used the urgent referral system currently in place for patients suspected of having cancer. This would mean patients being referred to a neurologist within two weeks, rather than waiting, in some cases, more than a year. However, Robinson acknowledged that funding constraints make this difficult: “There are no resources or political will to fund a two-week wait.”

Unpopular drugs

Another challenge in MS treatment is the relatively low takeup of available drug therapies. The UK, according to the Association of British Neurologists, is ranked 25 out of 27 European countries for the number of people with the relapsing form of MS who use DMTs. MS Society interim director of research Susan Kohlhaas said: “When people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”

Hobart suggested lowering the investigation threshold to drive up rates of diagnosis: “We have to lower the threshold for investigation … to pick up those who do have the disease.”

However, lower thresholds would be costly, warned London GP Dr Kate Adams. Referring to the fact that MRI scans can cost upwards of £130, she said that while GPs do not limit referrals, “there’s only so much money in the health system”.

Dr Raju Kapoor, consultant neurologist at the National Hospital for Neurology and Neurosurgery in London, said increased costs caused by speeding up diagnosis could be offset by improved health as people stay in work for longer. He said: “We’re getting into health economics – if you remove the lag, we will save money.”

Another approach to improving diagnosis, said Kapoor, is better contact between GPs and the neurologists to whom they refer patients. Kapoor said: “It’s rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” Adams regularly contacts specialists directly, and in Plymouth, said Hobart, GPs directly contact radiologists specialising in the central nervous system to discuss MRI.

Could testing be simpler?

Future strategies, said Peer Baneke, MS International Federation chief executive, could involve spending on new diagnostic tools, such as blood tests. Blood tests are currently used to rule out conditions similar to MS, but Baneke said: “Is it realistic to expect at some stage you could have a different marker for MS that would give an indication of the diagnosis?”

Attendees discussed off-label prescribing options – using medicines outside the terms of their licence if based on evidence and in patients’ best interests. However, as Kapoor said, “the fact we’ve been so rigid has meant we’ve not exposed our patients to a lot of potentially toxic drugs”.

Might the new NHS online system to manage high-cost drugs, Blueteq, result in drug therapies being rationed? No, according to Kapoor: “It’s about what’s on the label, so if a patient says ‘I want a high-cost, high-potency drug’ but they can’t have it, this isn’t based on it being high cost, it’s because the drug isn’t licensed for that particular situation.”

Attendees agreed that treatment decisions should be made jointly by patients and professionals. Pepper said his severe symptoms drove him to immediately consider “the top shelf” of drug therapy. However, he described the patient experience as “hugely variable”. He raised concerns that members of the social network for MS that he founded, Shift MS, may shun available treatment because they are not adequately informed. “I see a lot in our community talking of opting out of treatment – they just don’t particularly want to have treatment,” he said, adding: “I don’t think the implications of that decision are made clear – it’s hugely important to engage people with MS to empower themselves as early s as possible.”

Many around the table echoed Hobart’s optimism that “in relapsing forms of the condition, we can alter the natural history”. In addition, said Kapoor, new developments on the horizon for the progressive form of MS, mean “we are in a better place to control the disease”. The consensus, Robinson concluded, was that treatment must be more efficient – regardless of the type of MS. “Anything that makes access to neurologists and care of patients better is going to impact on people living with MS.”

At the table

David Brindle (chair) Public services editor, the Guardian

Dr Kate Adams GP and Guardian contributor

Susan Kohlhaas Interim director of research, MS Society

Debbie Quinn Policy adviser, UK MS Specialist Nurse Association

Dr Jeremy Hobart Consultant neurologist Plymouth Hospitals, NHS Trust

Dr Raju Kapoor Consultant neurologist, National Hospital for Neurology and Neurosurgery

Dr Ann Robinson GP and Guardian contributor

Peer Baneke Chief executive, MS International Federation

George Pepper Co-founder, Shift MS

Dr Klaus Schmierer Consultant neurologist, Barts Health NHS Trust