Category Archives: Beauty & Care

Boots apologises over morning-after pill pricing row

Boots has said it is “truly sorry” for the way it responded to a campaign calling for it to cut the price of emergency contraception and said it is looking for cheaper alternatives.

The announcement, late on Friday night, came after news that the women’s parliamentary Labour party (PLP) had written to the store’s chief pharmacist to express “deep concern” about the company’s refusal to reduce the price of emergency contraception, and as calls for a boycott continue to grow.

Boots had said on Thursday it would not lower the cost of the morning-after pill despite a campaign from the British Pregnancy Advisory Service (BPAS), a leading provider of abortion care, with its chief pharmacist, Marc Donovan, stating that the company did not want to be accused of “incentivising inappropriate use”.

Campaigners said the statement was insulting and sexist, and on Friday Anna Soubry, the Conservative MP for Broxtowe – where the Boots headquarters is located – said she was also writing a letter to the company asking it to make clear its reasons for not reducing prices.

Jess Phillips (@jessphillips)

Labour women join @bpas1968 in their campaign to demand @BootsUK rethink moral judgements and sheepish assertions on emergency contraceptive pic.twitter.com/y5N670TQ4I

July 21, 2017

The Labour letter, signed by the chair of the women’s parliamentary Labour party, Jess Phillips, as well as a number of prominent MPs including Harriet Harman, Yvette Cooper and Rachel Reeves, said: “Boots is the largest high-street pharmacy in the UK, and 90% of the population lives within 10 minutes of one of their shops.

“It is therefore completely unacceptable that British women have been paying up to £30 for a pill that costs a fraction of that to produce. The high cost of emergency contraception at Boots is preventing women from accessing it when needed.”

Both Tesco and Superdrug halved the price of their emergency contraceptive following the BPAS campaign, but Boots continues to charge £28.25 for Levonelle emergency contraceptive (the leading brand) and £26.75 for its own generic version. Tesco now charges £13.50 for Levonelle and Superdrug £13.49 for a generic version. In France, the tablet costs £5.50.

bpas (@bpas1968)

This is why Boots refuse to reduce the price of emergency contraception. Angry? Email @BootsUK now: https://t.co/g8NW8VAHX3 #JustSayNon pic.twitter.com/ohk3GBkBJs

July 20, 2017

“Boots’ justification infantalises women and places a moral judgment on them,” Phillips told the Guardian. “Their pricing is clearly for commercial gain as Tesco and Superdrug have addressed this issue with sensible pricing.

“Women do not need to be disincentivised by Boots to make personal choices about their bodies. We women go to Boots for our products, not moral guidance. Public opinion is not on their side so if they are worried about complaints they are listening to the wrong voices and customers should vote with their feet.”

Phillips said she did not believe Boots “would ever pass moral judgment on men’s contraceptives”. “Do they give a lecture on consent with all condom purchases?” she said.

In a recent YouGov survey, the median cost suggested by women for emergency contraception was £8, and the median cost suggested by men was £5. Almost a third of women and a quarter of men, the Labour letter added, believed emergency contraception should be free of charge.

“Concern about adverse criticism from pressure groups seems a very strange reason not to do the right thing,” Soubry said. “This is perfectly proper and lawful treatment. I’ve always found Boots to be an excellent business company, they employ a lot of people in my constituency, they are a valued employer and they’ve always had a strong desire to do the right thing throughout the whole of their long history. So not doing this doesn’t sit with the way Boots normally operates and the high standing it has locally.

“I would hope that they would be true to their tradition of doing the right thing, and doing the right thing is not giving in to pressure from the noisiest quarters. I am asking them for what reasons they are not reducing the cost of the morning-after pill given that other companies have reduced the charge. I urge them to reduce prices in accordance with their competitors.”

The MP Stella Creasy tweeted that Boots’ decision “contravenes consumer rights act given adds disproportionate charge which is not advertised”, while the writer Marian Keyes was among those condemning the company on Twitter, saying she would be “withdrawing my (considerable) custom”.

stellacreasy (@stellacreasy)

This is awful @BootsUK @BootsHelp & also contravenes consumer rights act given adds disproportionate charge which is not advertised.. https://t.co/DAvDiN1hAq

July 21, 2017

Announcing the retailer’s change of stance on Friday night, a spokesman for Boots said: “Pharmacy and care for customers are at the heart of everything we do, and as such we are truly sorry that our poor choice of words in describing our position on emergency hormonal contraception has caused offence and misunderstanding, and we sincerely apologise.”

In his original response to campaigners, Donovan said that Boots considered the issue very carefully but pointed out that the morning-after pill is already available for free in community pharmacies and NHS services.

Sophie Walker, leader of the Women’s Equality party, which had joined forces with BPAS to call for a boycott using the hashtag #justsaynon, said that the morning-after pill can be difficult to access for free on the NHS, with appointments at GP surgeries or family planning clinics hard to obtain at short notice.

“Many women will need to buy these pills over the counter, and it is irresponsible and exploitative for retailers to charge over the odds for them … Boots’ approach to this concern is indicative of a society that prioritises profit over women’s health and wellbeing,” Walker said.

Ann Clwyd MP, co-chair of the all-party parliamentary group on sexual and reproductive health, said: “Boots need to wise up. The reality is there are too many unwanted births. How come the tablets are available in France for £5.50? A case of Boots’ profit priority, I would say.”

Cancer patients’ grey hair unexpectedly darkens in drug study

A group of cancer patients’ grey hair has unexpectedly darkened after they took new types of drugs, researchers have revealed.

Chemotherapy is known to make patients’ hair fall out, but the 14 people involved were all being treated with new immunotherapy drugs that work differently and have different side effects from chemotherapy. A Spanish study suggests those may include restoring hair pigment, at least in patients with lung cancer.

Noelia Rivera, a dermatologist at Autonomous University of Barcelona, said they thought it could be an isolated case when it happened with the first patient. But the research team found the same thing when they asked other patients for photographs of themselves from before treatment.

The 14 people were among 52 patients with lung cancer being followed to see whether they developed bad side effects from the drugs — Keytruda, Opdivo and Tecentriq.

While most patients did not have a hair colour change, the 14 cases suggest it is not an isolated finding. In 13 patients, hair turned darkish brown or black; in one patient, it turned black in patches.

The same drugs have been linked previously with hair losing colour in patients with another cancer, melanoma.

All but one of the 14 patients in the Spanish study responded better to treatment than other patients, suggesting that hair darkening might be an indication that the drugs are working, the researchers said.

Rivera said they were continuing with the study to search for an explanation.

“It’s a fascinating report – one of those things that comes out of the blue,” said June Robinson, a Northwestern University research professor in dermatology. Robinson is also editor of the medical journal JAMA Dermatology, which published the study online this month.

She said the results deserved a deeper look but cautioned that it was too soon to suggest that they might lead to new treatments for unwanted grey hair.

Rivera noted that the drugs used in the study had serious side effects that made them unsafe for healthy people. But if it is confirmed that they do change hair colour, a different drug could be developed to treat grey hair, she said.

The pharmaceutical industry has previously capitalised on unexpected drug side effects. Examples include the male pattern baldness drug Propecia, the eyelash growing drug Latisse, and Botox anti-wrinkle injections. Active ingredients in these drugs were initially approved to treat enlarged prostates, eye pressure problems, and eye muscle spasms.

Cancer patients’ grey hair unexpectedly darkens in drug study

A group of cancer patients’ grey hair has unexpectedly darkened after they took new types of drugs, researchers have revealed.

Chemotherapy is known to make patients’ hair fall out, but the 14 people involved were all being treated with new immunotherapy drugs that work differently and have different side effects from chemotherapy. A Spanish study suggests those may include restoring hair pigment, at least in patients with lung cancer.

Noelia Rivera, a dermatologist at Autonomous University of Barcelona, said they thought it could be an isolated case when it happened with the first patient. But the research team found the same thing when they asked other patients for photographs of themselves from before treatment.

The 14 people were among 52 patients with lung cancer being followed to see whether they developed bad side effects from the drugs — Keytruda, Opdivo and Tecentriq.

While most patients did not have a hair colour change, the 14 cases suggest it is not an isolated finding. In 13 patients, hair turned darkish brown or black; in one patient, it turned black in patches.

The same drugs have been linked previously with hair losing colour in patients with another cancer, melanoma.

All but one of the 14 patients in the Spanish study responded better to treatment than other patients, suggesting that hair darkening might be an indication that the drugs are working, the researchers said.

Rivera said they were continuing with the study to search for an explanation.

“It’s a fascinating report – one of those things that comes out of the blue,” said June Robinson, a Northwestern University research professor in dermatology. Robinson is also editor of the medical journal JAMA Dermatology, which published the study online this month.

She said the results deserved a deeper look but cautioned that it was too soon to suggest that they might lead to new treatments for unwanted grey hair.

Rivera noted that the drugs used in the study had serious side effects that made them unsafe for healthy people. But if it is confirmed that they do change hair colour, a different drug could be developed to treat grey hair, she said.

The pharmaceutical industry has previously capitalised on unexpected drug side effects. Examples include the male pattern baldness drug Propecia, the eyelash growing drug Latisse, and Botox anti-wrinkle injections. Active ingredients in these drugs were initially approved to treat enlarged prostates, eye pressure problems, and eye muscle spasms.

Wake up, Boots. You can’t judge women who need the morning-after pill | Sian Norris

Yesterday Marc Donovan, the chief pharmacist at Boots, defended the chain’s decision to maintain a high price (£28.25) for women wanting to buy the emergency contraceptive, or morning-after pill. He told the British Pregnancy Advisory Service: “We would not want to be accused of incentivising inappropriate use, and provoking complaints, by significantly reducing the price of this product.” Rivals Superdrug and Tesco had cut the price of the drug to about £13.50 following complaints that it was artificially high; in France, it costs £5.50. The comments caused a backlash in the feminist and sexual health community, which argued that Boots’s decision not only creates a tiered system where the wealthier can access contraception, but it also positions women’s sexual health as a “moral” issue, and suggests that women are not capable of making sensible and informed choices about their contraceptive options.

Let’s start with the financial impact. By maintaining a high charge for the morning-after pill, Boots has made the drug out of reach for poorer women in society, who are often more vulnerable. As a result, it is helping to create a situation where emergency contraception is an option for women with money in the bank, while poorer women must cross their fingers that they can get a doctor’s appointment, or cross their fingers even more that they’re not pregnant. This is not acceptable. We should not have a system that financially penalises women in need of emergency contraception, let alone one that means a much-needed drug is only the preserve of the rich. There is no need for the high cost for the pill – the UK charges more than most other countries in Europe.

Then there’s Donovan’s comment about “incentivising inappropriate use”. This taps into a very real distrust of women to make sensible and informed choices about their sexual health and bodily autonomy. It’s one of the reasons why, for instance, we do not have abortion on demand, and instead women have to get permission from two doctors to have a termination. It’s this idea that when it comes to our reproductive choices, women don’t know what’s best for them – that we need a higher authority to tell us what’s good for us.


The morning after pill is legal in the UK. Women should be able to take it without being shamed

It’s not for Boots to decide when it’s OK for a woman to use the morning-after pill. It’s not for Boots to judge whether our use of the drug is appropriate or not. We are capable of making those decisions for ourselves.

Finally, Donovan claimed a fear of provoking complaints if the company makes it cheaper for women to access emergency contraception. This reminds me of when I was taught about the morning-after pill at school. My teacher, concerned about over the counter availability, worried that the pill “made it too easy for girls to say yes to sex”. Accessing contraception should not be a moral issue. The morning-after pill is legal in the UK. Women should be able to take it without being shamed. The fact that some people don’t agree with the availability of contraception should not mean a chemist makes it harder for women. Our bodies are not your battlegrounds.

Of course women can go to the doctor. But time is of the essence, and delaying to get an appointment can reduce the effectiveness of the drug. Closures of NHS walk-in centres have exacerbated this problem.

In a perfect world, we wouldn’t need emergency contraception. In a perfect world, condoms wouldn’t break; you wouldn’t get out of bed to remember that your supply of the pill has run out; men would never feed women the line “but babe, it’s nicer without a condom and anyway you can always get the morning-after pill”. In a perfect world, men would never rape women and girls.

But we don’t live in a perfect world. So as long as women need access to a safe and legal drug that prevents unwanted pregnancy, we should be able to get it – without being financially penalised or morally judged. It’s not for Boots to decide otherwise.

I’m a paramedic who has considered suicide and I’m not getting support

When I was 15, a teacher found me during lunch break and asked if she could have a word. Confused, as I was generally well behaved, I followed her to the office. I was told that a close friend of mine had been found by his parents that morning hanging in his bedroom. He was in intensive care at the local hospital but his family had been asked to prepare for the possibility that he would die shortly. Growing up, the ideas of major depressive illnesses, self-harm and suicide were almost entirely foreign to me.

People often ask whether this was what motivated me to enter healthcare at 17 and eventually land in my current position as a paramedic by 20. Frankly, I don’t know. What I do know, though, is that while suicide was a foreign concept to me at 15, it certainly isn’t now.

Almost a quarter of ­ambulance staff have post traumatic stress disorder, according to research published in the British Medical Journal, and about one in three suffer from mental health problems. Statistics are hard to come by, but reports of paramedics killing themselves suggest suicide in the profession is a problem. The Age in Australia reported that the rate of suicide among paramedics for the year to April 2010 was about 20 times higher than that of the general population.

I require antidepressants daily to numb thoughts of self-harm and suicide. I was diagnosed with major depressive disorder nine months after starting work with the ambulance service. When I attend call-outs to patients in a depressive crisis or who have self-harmed, it is like looking in the mirror. When resuscitating patients who have tried taking their own lives, it is akin to looking at what could have been.

It was after one such callout to a young man who had hanged himself in the living room to be found by his wife and young child, that I broke down.

I was in the middle of my fifth 12-hour shift, I had just had to pronounce a man not much older than myself deceased, counsel a grieving wife, assist the police with their investigations and ensure appropriate members of family and friends were coming to be with her. Having never called in sick in five years, I radioed the operations centre and asked them to stand me down as I would be going home for mental health issues. I was weeping, I was trembling, I was unsafe to continue working.

I will never forget the words that came back to me through the radio that night. “But there are calls waiting, can you not just wait until your days off?”

After explaining I was no longer safe to work, I was begrudgingly allowed to return home. I sat in silence for hours. The emotions of every patient I couldn’t save, every patient who had tried to hit me, every patient who had shouted at me while I worked to save them or their family came crashing over me like a wave.

Publicity around paramedic suicide generally focuses on the traumatic aspect of life on the road. What is either less known, or perhaps conveniently ignored, is the pervasive culture in ambulance services seemingly designed to incite suicide. Rostered 12-hour shifts which almost never finish in under 13 hours; missed meal breaks to attend more calls; threats to place poor performance markers on our record if we book ourselves unavailable to use the restroom more than once per shift; and, of course, frequent exposure to trauma most people will experience just once in their life are some of the stresses of the job.

Rather than immediate referral for six sessions with a psychotherapist, available to all employees, any request for help is almost universally met with the question: “Are you sure this is the right career for you?” This is followed by almost daily phone calls hounding for a return to work and questioning our commitment to the communities we serve.

This leads to any paramedic in a mental health crisis feeling unsupported and, worse, feeling they are weak. The worst part is, we all believe it subconsciously. We are afraid to take days off for mental health, fearing what our colleagues will think, fearing they will think we are weak, fearing what management will do. It is this dark undercurrent in ambulance services that continues to push paramedics to take their own lives rather than face their mental health problems.

  • In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here.

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Half of pupils expelled from school have mental health issue, study finds

Half of all pupils expelled from school are suffering from a recognised mental health problem, according to a study.

Those who are permanently excluded find themselves at a significant disadvantage, with only one in a hundred going on to attain five good GCSEs, which are often used as a benchmark of academic success.

The majority will end up in prison, says the study by the Institute for Public Policy Research, which estimates that of the 86,000-strong prison population, more then 54,000 were excluded at school.

The IPPR says its research lays bare the “broken system” facing excluded pupils. It flags up high levels of mental health issues among permanently excluded students – at least one in two, compared with one in 50 pupils in the wider population.

The thinktank also highlights the disadvantages such children face, as those excluded are four times more likely to grow up in poverty and twice as likely to be living in care. They are also seven times more likely to have special educational needs than those who are not excluded, the report claims.

After exclusion, the study says there is a downward spiral of underachievement, with teachers in schools catering for excluded pupils twice as likely to have no educational qualifications.

Kiran Gill, an IPPR associate fellow and founder of The Difference, which works to improve mental health provision for excluded pupils, described the system as “burningly unjust”.

She said: “Theresa May says she is committed to improving the mental health of young people. Addressing the most vulnerable children being thrown out of England’s schools is a good place to start. Because unequal treatment of mental health may be an injustice, but the discrimination of school exclusions is a crime.

“If the government is serious about real action on mental health, there needs to be dedicated funding and thought through solutions rather than sticking plasters on the symptoms of the problem.”

The IPPR research was published before the government’s latest annual figures on permanent and fixed period exclusions from schools in England in 2015-16, which is scheduled to be released on Thursday.

Responding to the report, the Department for Education said any decision to exclude should be lawful, reasonable and fair, and should only be used as a last resort in response to serious breaches of a school’s behaviour policy.

“This government is committed to working with local authorities and schools to ensure children in alternative provision receive a high quality education,” a DfE spokesperson said.

“We are strengthening the links between schools and NHS mental health staff and have announced plans for every secondary school to be offered mental health first aid training. Later this year we will publish a green paper with proposals for further improving mental health services.”

  • In the UK, Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here

HPV vaccine: anger over decision not to extend NHS scheme to boys

A decision not to vaccinate boys against a cancer-causing sexually transmitted infection has been condemned by health bodies and campaigners.

The Joint Committee on Vaccination and Immunisation (JCVI), which has been reviewing the human papilloma virus (HPV) vaccination programme, concluded that it was “highly unlikely to be cost-effective” to extend the scheme to include adolescent boys as well as girls.

Since 2008, all girls aged 12 to 13 are offered the HPV vaccination as part of the NHS childhood vaccination programme, and the JCVI has been considering whether to include boys on the scheme since 2014.

Up to eight out of 10 people will be infected with the virus at some point in their lives and it has been linked to one in 20 cases of cancer in the UK, according to health professionals. Campaigners have been calling for a gender-neutral approach to the vaccination, which would ensure that 400,000 school-age boys are not left at risk.

The committee, which has yet to publish its final recommendation, said in an interim statement that studies “consistently show” boys are afforded “considerable herd protection” when there is high uptake of the vaccine in girls.

Critics called the decision “indefensible”. The Faculty of Sexual and Reproductive Healthcare (FSRH), a membership body for healthcare professionals who work in sexual and reproductive health, said the decision should be reversed when the JCVI meets again in October.

Asha Kasliwal, the FSRH president, said the interim decision to deny boys the HPV vaccination was a huge missed opportunity for improving long-term sexual and reproductive health outcomes and tackling gender inequality.

Kasliwal said: “FSRH aims to improve women’s sexual and reproductive health, especially access to contraception. However, HPV affects not only women, but also men, and FSRH firmly believes that men and boys are vital in contributing to secure women’s reproductive health and rights.

“We support boys’ and men’s right to access high-quality [sexual and reproductive healthcare] services and live a life free of sexually transmitted infections such as HPV.”

Peter Baker, director of the campaign group HPV Action, said the decision was about saving money and not improving health: “It is astonishing that the government’s vaccination advisory committee has ignored advice from patient organisations, doctors treating men with HPV-related cancers, public health experts and those whose lives have been devastated by HPV.”

Baker said HPV Action would urge ministers to make the right decision and said there might also be grounds for a legal challenge on the grounds that a decision to leave boys and men at risk breaches equality law.

A recent poll conducted by HPV Action showed that 94% of GPs backed the expansion of the programme, with the same proportion saying if they had a son, they would want them to receive the vaccination. Both positions were also supported by 97% of dentists.

Mick Armstrong, the chair of the British Dental Association, said: “HPV has emerged as the leading cause of oropharyngeal cancers, so JCVI’s unwillingness to expand the vaccination programme to boys is frankly indefensible. The state has a responsibility to offer all our children the best possible defence.

“Dentists are on the frontline in the battle against oral cancer, a condition with heart-breaking and life-changing results. Ministers can choose to sit this one out, or show they really believe in prevention.”

The JCVI said: “The JCVI is consulting on its interim findings to ensure that the most appropriate and up-to-date evidence has been used, and that reasonable assumptions have been made where evidence is limited or unavailable. Once the consultation is completed, the JCVI will develop and publish its final advice.”

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