the doctor
In this issue
3
At a glance
The health secretary has made a good impression and now he must deliver
4-7
ARM news
The ‘vandalism’ of general practice, and calls to implement safe scope of practice for MAPs
8-11
Finding the zebra
How can we get better at spotting rare diseases?
12-13
A neglected drug... ... for neglected patients. How a cheap and effective treatment has been allowed to become scarce
14-17
The old ways
Fewer interventions, more listening – a philosophy for the care of older patients
18-19
Dr Finlay’s world
The challenges of remote and rural practice
20-23
Nye’s lost legacy Might we finally get an occupational health service for all?
24 Your BMA
Challenging poor behaviours
Welcome
Phil Banfield, BMA council chair
It is not always the case the chair of the BMA and health secretary agree but Wes Streeting’s assertion the NHS is broken echoes what we have been telling successive governments for years. Our workforce has been taken for granted for too long and is burned out, our places of work are falling into disrepair and patient safety is being compromised every single day – and night.
Earlier this month I wrote to Mr Streeting and said it was my hope the election of a new government, and his appointment as secretary of state for health and social care, could allow us to begin a new ‘constructive dialogue’ and that we would like to ‘work together to get the NHS back on its feet’.
Mr Streeting met junior doctors leaders as soon as possible upon entering office – hopefully with a genuine desire to end our long-running dispute – and also signalled his intent to reverse the underfunding of general practice. His sense of urgency must deliver tangible action to value the skills and expertise of doctors who dedicate themselves tirelessly to patients. The proof of a more healthy pudding is still in the eating, and I am under no illusion we will need to continue to fight nationally and locally to reverse the decline of our National Health Service and re-establish the professional voice of doctors.
In this issue of the magazine, we report from the British Medical Association’s annual representative meeting – including covering the debate around themes such as the effects of the cost-of-living crisis on doctors, and the move to rename junior doctors as resident doctors, which will begin in September.
We take deep dives into the state of occupational medicine and geriatric care, two parts of the health service which often feel forgotten. And we also speak to doctors who are campaigning to ensure chance plays no part in whether rare diseases are diagnosed or not.
In the July issue of The Doctor we also exclusively reveal doctors’ warnings that shortages, and the cessation of production, of medicines used to prevent heavy drinkers from a ‘debilitating’ degenerative neurological condition will affect some of the most disenfranchised people in society, where care in some areas is already compromised. Nye Bevan’s quote about the ability to pay might also be applied to the ability to provide effective treatment when he said: ‘No society can legitimately call itself civilised if a sick person is denied medical aid because of lack of means.’
AT A GLANCE Mountain to climb
Common sense is not a phrase that could have frequently been used to describe the words and actions of recent health secretaries, but in the space of just a few days since taking offi ce Wes Streeting appears to have found some.
In Mr Streeting’s fi rst few days in offi ce he visited a North London GP practice where he made clear he understands general practice is underfunded and even went on to outline his belief that care closer to people’s homes and early intervention to avoid them ending up in emergency departments is clearly desirable – and much cheaper.
The new secretary of state for health and social care also met with junior doctors leaders as soon as possible promising more talks and a ‘reset moment’ in a long-running and dispiriting dispute.
Making a good fi rst impression is one thing, though. Delivering on pledges and promises is another. As BMA council chair Phil Banfi eld says in this issue of the magazine: ‘The proof of a more healthy pudding is still in the eating, and I am under no illusion that we will need to continue to fi ght both nationally and locally to reverse the decline of our National Health Service and re-establish the professional voice of doctors.’
Professor Banfield had written to Mr Streeting upon his election outlining some of the significant challenges facing the NHS, including branch-ofpractice disputes, medical associate professions and
A NEW CHAPTER
We’ve launched the first dedicated website for our content, at thedoctor.bma.org.uk . We are encouraging members to opt out of receiving the printed magazine by logging into the BMA website and adjusting your preferences. At the end of this year, for cost and environmental reasons, The Doctor will be fully digital, and the print edition will no longer be sent.
waiting times and staffi ng. Downing Street’s chief of staff Sue Gray apparently has a ‘shit list’ of the great crises facing the country but, in truth, she could have one exclusively for health and social care, such are the challenges and crises of the age.
Over the course of more than two years there have been 11 rounds of strikes by junior doctors in England – and BMA junior doctors committee co-chairs Robert Laurenson and Vivek Trivedi are committed to not relenting until they have secured a roadmap to pay restoration. Showing the workforce they are valued is just one of the problems in Mr Streeting’s in tray.
The dispute comes as latest figures (from April 2024) suggest the NHS waiting list in England stands at 7.57 million cases, made up of around 6.33 million individual patients. About half of these have been waiting more than 18 weeks and more than 300,000 for more than a year. Elsewhere, cancer targets are being missed, only 74 per cent of patients attending emergency departments were seen within four hours and GPs are finding it increasingly hard to find avenues to refer patients. It is certainly time for actions and not just words.
At the time of writing Mr Streeting is joined in the Department of Health by ministers of state Stephen Kinnock and Karin Smyth as well as Parliamentary under-secretaries of state Andrew Gwynne and Baroness Merron. There is expected to be another addition to the team.
WORK TO DO: The NHS waiting list for England stands at more than 7.5 million cases
Doctors and medical students came together last month in Belfast at the annual policy-setting event for the BMA. For more coverage, go to thedoctor.bma.org.uk and search ‘annual representative meeting’
BANFIELD: Doctors more reluctant to speak out
‘Vandalism’ on general practice
The Government has committed ‘an act of vandalism’ on general practice, which has left it facing unsustainable pressure and a workforce crisis, BMA council chair Phil Banfi eld said.
He told the BMA annual representative meeting on 24 June it was ‘bonkers’ that, while patient demand had soared, a BMA survey had found 84 per cent of locum GPs in England were struggling to get work.
He said: ‘The state of general practice around the UK is a mess – created by those in power, who have not only watched, but aided and abetted the decline of general practice, and with it, the morale and goodwill of GPs.’
Professor Banfield criticised the then prime minister Rishi Sunak for his failure to resolve the junior doctors’ pay dispute in England, saying it was ‘his choice’ not to resolve it, and had happened ‘on his watch’. Speaking two weeks before the general election, he said: ‘It is deeds, not words, that will guide our relationship with any new Government.’
He also pointed to the successes brought about by the collective effort of BMA members, such as the pay award to junior doctors in Scotland which averted industrial action.
Professor Banfi eld announced
the BMA was taking legal action against the GMC for its use of the term ‘medical professionals’ to describe PAs and AAs (physician and anaesthesia associates), which it will be regulating from December. The BMA strongly believes PAs and AAs need regulating, but that the GMC is not the right organisation to do it.
In his speech, he cited a BMA survey of 18,000 doctors where 87 per cent had observed MAPs (medical associate professions) working in ways that were a risk to patient safety.
‘NHS England says MAPs are not doctors, but propose no ceiling on their scope of practice,’ he said. ‘How they can entertain both positions makes no sense.’
Professor Banfield said that, despite years of calls for the NHS to establish an open, transparent culture, doctors had actually grown more reluctant to speak out, with the number feeling confident about raising concerns at work falling in six years from almost half to just 31 per cent.
‘I said the BMA will not stand idly by as employers try to silence those who raise concerns, and it has not. You have come forward to your union because you are so fearful of your employers. We will create the safe space you have been denied. We owe it to you, and we owe it to our patients.’
EMMA BROWN
ARM2024
PARKER: ‘Patients have died’
MAPs no substitute for doctors
The BMA is demanding MAPs (medical associate professions) are not used as a substitute for doctors in the NHS and is insisting on a pause in the recruitment and deployment of PAs (physician associates).
Doctors overwhelmingly voted in favour of a motion at the annual representative meeting which also affirmed the use of the BMA’s traffic light system for MAPs and that MAPs must not prescribe or see undifferentiated patients.
Appropriate training must be offered to doctors supervising MAPs, the motion says, adding that doctors who refuse to supervise non-medical practitioners should be supported.
Further, it calls for an ‘urgent’ public inquiry into reports that MAPs have worked outside of their competence, including instances of inappropriately signing prescriptions and requesting ionising radiation. It affirms that doctors have a moral and professional duty, under GMC Good Medical Practice, to raise concerns about any effect on or potential effects on patient safety.
Samuel Parker, a GP in the north-east of England and a member of the BMA’s MAPs steering group who tabled the motion, noted that the 1983 Medical Act prohibits the representation of a non-doctor as a doctor yet there have been ‘countless, unforgivable examples’ such a recent NHS poster campaign with the wording ‘the physician will see you now’.
He explained that the legal action the BMA is taking against the GMC was in response to the ‘uncontrolled erosion of
the medical profession’.
‘Patient safety regarding MAPs, including reports of MAPs working beyond their competency, have been repeatedly raised by doctors, patient groups and MPs. Tragically, patients have died.’
He argued that using MAPs reduced capacity to employ doctors, and that low-funded practices were more likely to rely on PAs, which ‘only worsens health inequalities’.
Dr Parker added that PAs were not even necessarily cheaper than GPs, highlighting one job advert for a £90,000 per year locum PA role.
More importantly, he highlighted how degrees in English literature and homeopathy were being allowed to fulfil entry requirements for PA courses.
‘It takes 10 years to fully train a GP,’ he said. ‘In contrast it is two years for a PA. No one would board a plane flown by a pilot with 20 per cent training, so why put underqualified MAPs on to NHS patients?’
Doctors have been asked by the BMA to sign an open letter to party leaders, expressing grave concerns about the risks posed by medical associate professionals, as currently deployed, in the NHS.
Its calls include the implementation of a national safe scope of practice for MAPs underpinned by robust evidence and regulation, an end to widespread doctor unemployment and replacement, and a halt to any current plans to provide MAPs with prescribing responsibilities.
Sign the letter at https://direc.to/kE4x
EMMA BROWN
EMMA BROWN
ARM2024
LUCAS:
Junior doctors feel ‘demoralised and burnt out’
Call to subsidise junior doctors
BMA representatives have called for junior doctors to be given subsidies to help them pay for food on shift , accommodation, utility bills and parking in a bid to improve wellbeing and workforce retention.
It was voted through days ahead of the latest strike in England calling for restoration of junior doctors’ pay to 2008/09 levels, since when it has eroded by nearly 30 per cent, despite some opposition in the debate arguing that if full pay restoration was achieved, subsidies would not be needed.
GP registrar Nicholas Lucas asked the annual representative meeting to consider the costs faced by junior doctors forced to move around on rotations. He cited a fictional doctor called Rose as an example of a typical situation for a junior doctor.
She had £100,000 of student debt, was having to find affordable accommodation for a new rotation, was choosing between a two-hour round commute on the bus or paying expensive car parking fees at her hospital’s visitor car park and couldn’t afford to eat at the hospital canteen every day.
‘Rose just wants to be able to focus on her job, and her development. She wants to revise for her postgraduate exams, she wants to be a surgeon. Instead, she feels demoralised and is burnt out,’ said Dr Lucas.
‘This is the reality many resident doctors
currently, and will continue to face.’
Dr Lucas said providing such subsidies would represent ‘a significant step forward’ towards improving morale and wellbeing of junior doctors, as well as improving levels of retention.
Eilidh Garrett, a foundation year 1 doctor, said she was ‘absolutely for the sentiment of the motion’ but argued doctors should not have to rely on subsidies.
‘Obviously if you’ve got a six-day, 70-hour work week, trying to do the basic things is really quite hard,’ she said.
‘But the subsidy your employer gives you to pay for day-to-day living costs is called a salary. And if that is not sufficient to meet your expenses then you need be paid more. The majority of this motion would be fixed if doctors were just paid fairly.’
Responding to the debate, Dr Lucas said he agreed doctors need full pay restoration.
‘But I think we can have both,’ he said.
‘Pay is one factor, but valuing your workforce is a completely different factor. This is one way of showing a commitment and a value to your workforce.’
The motion passed in full, but the part calling for subsidised car parking was taken as a ‘reference’, meaning it was noted but will not become BMA policy, so as not to undermine existing policy which says parking should be free for doctors and students while working.
ARM2024
DAVISON:
‘Patients deserve to see medical practitioners’
From juniors to resident doctors
Junior doctors are to be called ‘resident’ doctors in the BMA’s policies and communications from September, after a vote at the annual representative meeting.
A majority favoured replacing a title which has long been seen as misleading to patients and demeaning to doctors.
The term ‘resident’ was chosen after an extensive period of consultation by the BMA UK junior doctors committee and devolved nation JDCs.
The call to replace the junior title at last year’s ARM was presented by the then foundation year 1 Sai Ram Pillarisetti, who spoke of how the term distorted patients’ understanding of the skills and experience of the doctors caring for them.
He told last year’s ARM: ‘This title of junior doctor has proven misleading and indeed demeaning to the general public, it may imply lack of experience or competence, creating a misunderstanding about the work we do and the qualifications we hold.
‘Every day these so-called junior doctors act as the first point of contact for sick and unwell patients on the ward, they’re in theatre operating on your loved ones, and they’re leading teams across various specialties in our health service.’
The BMA will be engaging with stakeholders in the NHS and beyond to encourage the adoption of the term ‘resident doctors’ and it is hoped that it will go into standard use when referring to those from FY1 through to achieving their certificate of completion of training.
The ARM also called for an immediate halt to use of the title ‘consultant’ by those not on the GMC specialist or GP registers.
Leeds-based consultant Callum Wood said: ‘When patients are referred to a consultant, they assume that they’ll be speaking to a doctor.
‘I don’t in any way wish to denigrate the achievements and hard work of consultant practitioners, consultant nurses or consultant radiographers, they obviously have essential skills. But when patients ask to see a consultant, or ask who is responsible for their medical care, the answer is the medical doctor.’
Northern Ireland associate specialist doctor Leanne Davison said she ‘applauds the sentiment of the motion’ in that ‘patients deserve to see medical practitioners’.
But she was speaking against it because she felt the motion would ‘exclude’ associate specialist and specialist doctors ‘who are by definition senior decision-making clinicians’ and could be left ‘unrecognised’.
She also warned it might ‘adversely impact’ the training of specialty trainees who, in the last year of their training, ‘act up’ as consultants.
Dr Wood said the process of senior trainees acting up was ‘tightly regulated’ and would not be affected by the motion, and ‘completely accepted’ the point about SAS doctors and hoped the ‘spirit of the debate shows we would not exclude them’.
FINDING THE ZEBRA
Diagnosis has to rely to an extent on playing the odds –‘common things are common’. But this means patients with rare diseases can often go years before finding out what is wrong with them. How can we improve at spotting the zebras among the horses?
Seren Boyd reports
Beth Meek was a healthy 40-something, juggling roles as a GP partner, prison doctor and clinical lead in her Sussex clinical commissioning group.
Then, she slipped on a water slide and began to feel unwell: pulsatile tinnitus in one ear and a persistent worsening headache. Her condition was first diagnosed as migraine but tests later showed she had had TIAs (transient ischaemic attacks) caused by bilateral carotid artery dissections.
She recovered but, seven years later in 2022, she began to feel seriously unwell; bloods indicated a heart attack.
Owing to her medical history, she urged her doctors to consider coronary artery dissections as the cause –something she had learnt about on a Facebook group. One consultant told her: ‘Coronary arteries don’t dissect.’ Another reminded her of the guidelines:
‘There’s an element of chance as to who you see and what their experience has been’
it was more likely to be ‘normal’ heart disease.
Three hospitals later, she was referred to a cardiologist specialising in rare conditions and diagnosed with SCAD (spontaneous coronary artery dissection). Two years on, she is still off work, still recovering.
Dr Meek had become one of those worst-case scenarios every GP fears – the rare occasion where odd symptoms turn out to be a rare condition, a ‘zebra’ not a ‘horse’.
‘I was able to advocate for myself and push to have a referral to the right clinics,’ she says.
‘But I know I practised medicine as “common things are common”, and I would have been horrified if a patient came to me with something they had learnt on Facebook.
‘But to some extent this is how medicine works: there is an element of chance as to who you see and what their experience has been.’
‘Denied existence’ Lucy McKay and her organisation M4RD (Medics 4 Rare Diseases) are committed to ensuring chance plays no part in whether rare conditions are diagnosed or not.
Her older brother died of a rare genetic condition as a child: her parents were heavily involved in advocacy and fundraising for research and clinical trials.
Yet, at medical school, she found rare and genetic conditions were taught as curios. ‘The message was: “You won’t see them, common things are common, there’s nothing you can do about it anyway,”’ says Dr McKay.
‘I’d sit in our pathology museum, surrounded by people with rare conditions, or at least bits of them in jars, all of whom had contributed to our medical knowledge, yet in my medical education, their existence was being denied.’
One of the mantras of M4RD, which she co-founded while at medical school, is that rare diseases are ‘individually rare but collectively common’. They affect an estimated 3.5 million people in the UK.
Yet, too many people living with a rare disease are condemned to a ‘diagnostic odyssey’, a grand tour of different specialists and services which takes on average four to six years to reach diagnosis, says M4RD. Most rare conditions are multisystem and lifelong.
‘In the UK you can’t be referred between specialists,’ says Dr McKay. ‘So you go from GP to specialist, to GP, to specialist, until someone joins the dots and suspects an underlying condition.’
The latest available figures
M C KAY:
‘Rare diseases are individually rare but collectively common’
suggest the diagnostic odyssey costs NHS England £340m a year. The burden on primary care, where GPs are left to care for patients with as yet unexplained symptoms without support, is immense.
European countries screen for more than 20.
‘So you go from GP to specialist, to GP, to specialist, until someone joins the dots’
And the human cost of delay is incalculable, says Dr McKay. Early diagnosis is key to slowing progression in many rare conditions; some metabolic conditions can be fatal if undiagnosed.
‘And the mental health impact is huge: you’re likely to experience denial of your symptoms, denial of your lived experience, not being listened to, and long periods of uncertainty.’
Probabilities
GPs are often blamed for ‘missing’ rare conditions, but that isn’t fair, says Dr McKay. Without robust rare disease education and training, and without knowing about the resources available to them, the odds are stacked against GPs in the zebra-spotting game.
About 70 per cent of rare conditions emerge in childhood; 80 per cent are genetic. The UK Newborn Screening Programme tests for nine conditions in the UK; many
Paediatric surveillance of health is minimal too, Dr McKay points out. Unlike in many European countries, children in the UK do not have routine checks to monitor their development and flag risks or difficulties at an early stage. So, when a patient presents with a ‘problem’, the GP often has little prior clinical information to go on.
Systemic pressures compound the problem, says Dr Meek. There is little time for thorough investigations of patient histories, although medical summarisers supported GPs in her practice. Double or triple appointments were rarely feasible, continuity of care almost impossible. She and her colleagues prioritised shared learning and collaborating on cases, but that dwindled in busy times.
To a point, though, general practice has always had to bet on horses while negotiating the risk of an occasional zebra. Exploring low probabilities costs time and money.
‘You want to rule out the important things, the heart attack, the stroke, but spotting underlying conditions is really difficult,’ says Dr Meek.
‘I was lucky, in a diagnostic sense, there was no missing my symptoms. But I just couldn’t put it all together, my colleagues didn’t, and my GP couldn’t either. And I don’t in any way blame them.’
‘You can’t say you’re never going to come across a case’
Her own health crisis has made her more alert to rare conditions – but has also shaken her confidence.
‘Once or twice, after my TIAs, I admitted a patient with similar symptoms and said to the medics on call, “I’m wondering if it could be a carotid artery dissection.”
One once said, “Why on earth would you think that?” And I had to say, “Because it’s the right symptoms and because I’ve had it.” You can’t say you’re never going to come across a case. It does worry me a lot, if I do go back to work, how I will manage that uncertainty.’
Diagnostic tools
Unlike Dr Meek, blues musician David Hick felt his health deteriorating gradually, over years.
He had had fatigue and painful muscular spasms as a child, but doctors were unconcerned: he was ‘just tall and skinny’. Or ‘lazy’. By his early 20s his mental health had deteriorated sharply: ‘I felt like
I just wasn’t good at certain things, which really affected my confidence.’
It was a physio treating Mr Hick for a back injury who contacted his GP who referred him to a neurologist. Finally, last year, aged 35, Mr Hick was diagnosed with Becker muscular dystrophy. ‘I’d never heard of muscular dystrophy before,’ he says. ‘It felt like a grenade had gone off near me: I couldn’t hear a thing.’
He is now supported by a specialist neuromuscular centre in Newcastle and a patient community through Muscular Dystrophy UK; he’s also involved in a clinical trial.
But is it inevitable people such as Mr Hick with slow-onset or wide-ranging symptoms must wait so long for diagnosis? Dr McKay insists not.
She recognises GPs ‘are trying to work with their hands tied behind their back’, with ever less time and resource available and little or no dedicated rare disease training in undergraduate or postgraduate curricula. But even ‘suspecting a rare disease’ is a good first step, she says.
The current diagnostic tools for rare conditions such as FindZebra ‘require doctors to have considered rare disease in the first place’, she says. Yet, M4RD surveys consistently find doctors underestimate how prevalent rare diseases are. The European Commission defines a ‘rare disease’ as one which affects fewer than one in 2,000 people.
M4RD’s approach is to consider rare disease a distinct discipline of medicine in which patients face a common set of challenges, owing to the low prevalence of their conditions. The charity provides free rare-
disease training for doctors and medical students on its M4RD Learn platform. The first module, ‘Rare disease 101’, takes less than an hour to complete.
Recent research by Dr McKay identifies seven ‘red flags’ common to many rare conditions – and they’re not necessarily biomedical. As well as more obvious flags such as multiple specialist referrals and misdiagnoses, the list includes ‘multi-system involvement (three or more)’ and ‘difficulties at school’.
‘The patient is not going to say, “I’ve got one major congenital anomaly and two minor ones. And if you notice, my urea is always slightly high.” But if you have a five-year-old whose file is considerably bigger than their sibling’s, treat the sibling as the control and take the big file as potentially “something going on underneath”.’
M4RD also offers a range of training and tools to help healthcare professionals learn about specific conditions, as well as signposting other sources of support and information, from Orphanet to the National Genomics Education Programme’s GeNotes.
However, Dr McKay insists doctors can develop a gut feeling for rare disease, a gestalt that helps them see patterns.
‘It’s not about suspecting a rare disease in every patient. But if there is diagnostic uncertainty, then consider an underlying rare disease and check for “red flags”.’
Knowing where and how to refer patients with suspected rare disease is another challenge. Dr Meek could draw
MEEK: A question of putting together all the symptoms
on the support of medical secretaries to help with researching options, but it took time.
Patient advocacy groups typically have online resources and events to help doctors learn about specific conditions and make referrals.
to them, to help them access specialist support.
Yet, for all this, it is still very much the role and remit of patient advocacy groups and charities such as MDUK to make these connections. MDUK even finds itself advising ICBs (integrated care boards) in England on which specialist services for which rare conditions ICBs now have direct commissioning responsibility for.
Too many GPs and patients are still struggling to manage conditions without support, says MDUK director of campaigns, care and support Rob Burley.
schemes in Cumbria, where she now lives.
What she has learnt as a patient is the need for doctors, including herself, to have humility. She got her SCAD diagnosis when a consultant cardiologist at a Sussex teaching hospital had the grace to admit his ignorance and contact a specialist in Leicestershire.
‘Throughout my journey the issue has been people not admitting they don’t know. Just say if you don’t know and go look it up. And we need to be advocates for our patients who have got weird symptoms that just don’t fit together.’
‘The issue has been people not admitting they don’t know. Just say if you don’t know and look it up’
For example, MDUK (Muscular Dystrophy UK), which supports Mr Hick, offers free online courses and upskilling webinars for healthcare professionals. It has also developed regional neuromuscular networks whose aim is to connect GPs and the wide range of community services used by people living with muscle-wasting and muscle-weakening conditions, with specialist services in their region. They facilitate networking and sharing of best practice, as well as identifying service gaps or challenges to be addressed.
And some specialists are involved in outreach.
The Atkinson Morley Neuromuscular Centre at St George’s Hospital in London, for example, actively liaises with GP practices to try to identify patients with neuromuscular conditions who are not known
‘Our Centre of Excellence Awards recognise great examples of partnership, of specialists reaching out into local services,’ he says.
‘But we do still find people who are still being looked after by their GP, either because they don’t have a diagnosis, or they don’t feel the need to go to a specialist centre.
‘Neuromuscular conditions cover an incredibly wide range of rare and progressive conditions, and the diagnosis journey is complex. It’s therefore crucial that we improve the understanding and knowledge of nonneuromuscular specialist healthcare professionals to ensure the referral process is efficient – as well as the coordination of support and ongoing condition management.’
Humility
Dr Meek is now a patient ambassador for M4RD, using her story to impress on others the need to take rare conditions seriously. She hopes to get involved in GP training
For Dr McKay, it’s a question of fairness: despite the UK Rare Diseases Framework and associated action plans in all four UK nations, there remain huge health inequalities around rare conditions.
Things will not change until rare disease becomes about people, not statistics, she says.
‘Since the first UK Rare Disease Strategy in 2013, there has been a lot of public resource dedicated to health science innovation such as artificial intelligence for analysing big data, genomics and gene therapy,’ says Dr McKay. ‘But I am not convinced that people with rare conditions and their families are feeling the relative benefit.
‘Current rare-disease training tends to focus on biochemical detail. We need to concentrate on the people impacted. Rare is a number but it is also an experience. This experience can be made far more manageable with a safety net of understanding and compassionate individuals involved in their care.’
HICK: Eventual diagnosis ‘felt like a grenade going off’
Pabrinex is a cheap and effective drug, which can have a life-changing effect. So why is there a shortage? Because, say doctors, the patients who need it ‘don’t have a voice’. Peter Blackburn reports
PABRINEX: Shortage could have profound consequences for patients
A
neglected drug for neglected patients
Doctors have warned that shortages, and the cessation of production, of medicines used to prevent heavy drinkers from a ‘debilitating’ degenerative neurological condition will affect some of the most disenfranchised people in society – and care for patients in some areas is already ‘compromised’.
The manufacturers of Pabrinex, a high-potency blend of vitamins, which comes in IM (intramuscular) and IV (intravenous) forms, have announced the IM medication will be discontinued and supplies of the IV form are already running low and will not be replenished until the second half of 2025 at the earliest. In the meantime, the Department of Health has told clinicians to review their use of Pabrinex to ensure it is only being offered where ‘clinically necessary’ and
supplies of remaining products are being restricted.
Doctors and charity leaders across the country have raised concerns about the effect on patient care, with staff in some areas reporting stocks have already run out, and others receiving minimal or ‘unhelpful’ communication about the impending shortages of a drug which costs just £2 per treatment.
Local areas have now been told to use unlicensed alternative products, with each responsible for assessing the ‘quality’ and ‘suitability’ of the medicines in lieu of central evaluations.
David Bremner is medical director of Turning Point, a charity which provides care and services to around 25 per cent of people being supported for drink problems in England. Dr Bremner, who is a consultant addiction psychiatrist, says the
medicines shortages, which come alongside continuing issues with the detox drug chlordiazepoxide, reflect the lack of care and status given to this patient group, following years of austerity cuts.
‘This would never be tolerated in cancer treatments,’ states Dr Bremner. ‘We have two drugs which are the gold standard of treatment, and neither are [consistently] available any more. Can you imagine that being accepted elsewhere? This is a group that doesn’t have a voice.’
Pabrinex is a high-potency concentrate solution of vitamins, including vitamin B1 or thiamine. It is given to patients at risk of developing Wernicke-Korsakoff syndrome – a degenerative neurological condition caused by lack of thiamine, which occurs in people suffering from alcohol addiction or misuse. Heavy
‘Pabrinex is the cheapest, most basic, most useful thing we give drinkers’
alcohol use lessens the body’s ability to absorb vitamins and problem drinkers are given high doses through injection. There are a number of unlicensed thiamine injection alternatives available, which are widely used around Europe but legislation would be required to license them.
Dementia risk
Scottish consultant addiction psychiatrist Iain Smith says: ‘I have a patient just now who was in a foreign country and didn’t get the thiamine they needed and may well [now] have a life-long disability.’
Dr Bremner adds: ‘This is a very serious and debilitating dementia that happens in young people. People can live for 40 years in specialist care settings with multiple nurses trying to manage them, all because of not getting a shot of vitamins.’
The IV form of the medication is used particularly in hospitals to treat complications of alcohol addiction or overuse. Scottish emergency medicine consultant David Chung says ‘not having it will be a problem’. He adds: ‘Seeing as alcoholrelated admissions are about five to six times higher in more deprived populations you can see straight away who this will impact the most.’ Dr Chung says his hospital has enough supply to last until roughly Christmas this year.
GP Marcus Bicknell, who works at an inpatient detox unit in Nottingham, says his supplies of the ‘essential’ Pabrinex ran out last month: ‘It is the cheapest, most basic, most useful thing we give drinkers.’
He adds: ‘Our care is being
compromised right now. The patients who would have been getting five doses are not getting any from us and these are patients drinking two or three hundred units of vodka a week and at great risk.’
Dr Bremner sits on national groups with OHID (the Office for Health Improvement and Disparities) and says, in his view, national leaders have reacted quickly to the supply problems but he urges expedited action on legislation to license an alternative product which can be available across the country to all patients who could benefit.
Steve Willott, GP clinical lead for alcohol and drugs in Nottingham, says: ‘As soon as possible a sustainable solution is needed – getting injectable thiamine as a licensed option is crucial. This situation is a sticking plaster currently.’
Rob Hampton is a GP in Leicester who works in a private rehab facility. He says his organisation, even though Care Quality Commissionregistered and in regular contact with NHS England, has not been advised about the shortage and was informed by a local pharmacist. He says his facility would have to turn away patients at risk of developing neurological complications if the drug becomes unavailable. He says: ‘It could increase the burden on the NHS and reduce an avenue for people who can’t access treatment.’
Doctors and experts across the country tell The Doctor a lack of profitability – combined with the effects of Brexit – are likely to be driving the issues.
Dr Bremner says: ‘The profit margins for these things are small. They are off patent now.
The tragedy is if this was a very expensive drug, there would be an incentive to produce it.’
In an email to The Doctor, Andrew McKerracher, a vice president at Grünenthal Meds, the pharmaceutical company responsible for Pabrinex, blamed changes in EU regulations for the issues. He says the firm had found a new manufacturing partner but that the process is ‘complex’ and stocks will not last the time needed to make the move. Mr McKerracher says the firm had discontinued the IM form after ‘extensive analysis’ of the timescales and complexity involved.
Access talks
Dr Bicknell says this is ‘a story of the ineptitude of medicine management in this country’ and describes the relationship between NHS and government health bosses and the pharmaceutical industry as being ‘clearly not fit for purpose’.
The Department of Health says it has no ‘powers to insist that a company continues to keep a product on the market’ and that it is working closely with NHS England, MHRA (the Medicines and Healthcare products Regulatory Agency), the devolved governments and other stakeholders ‘to ensure patients have access to the treatments they need’. It says clinicians should ‘assess patients locally to decide on their best treatment option’.
The MHRA refused to answer questions about negotiations with the manufacturer and processes around unlicensed alternatives, citing ‘commercial confidentiality reasons’.
‘Our care is being compromised right now’
THE OLD WAYS
Fewer medical interventions done ‘just because we can’. More time, kindness and listening. And do as you would be done by. Lucy Pollock, geriatrician and author, explains her philosophy when caring for her older patients to Seren Boyd
Geriatric medicine has long had a bit of an image problem.
A first-year medical student with an ambition to join the specialty is a rare find. And any such ambition would receive little encouragement as ageing and geriatrics barely feature in medical school curricula.
There is another issue: as consultant geriatrician Lucy Pollock is the first to point out, ‘no one wants to be seen by a geriatrician’. (A psychogeriatrician colleague insists he is even less popular.)
‘People pitch up in our clinic and they’re thinking: the GP said it was for an MOT or a specialist review. Nobody said anything about geriatrics!’ says Dr Pollock.
‘It definitely has been a Cinderella specialty – with people not recognising the very sound science underpinning it – and that has held it back. But it is an important specialty and it is important it comes to the foreground now.’
Dr Pollock wants to champion geriatric medicine and the typically ‘modest types’ who make up its ranks –because she feels its priorities and concerns are often misunderstood, even by colleagues in other specialties. And even more importantly she wants to speak up for geriatrics’ clientele – the millions of individuals anonymised and bagged together as ‘older people’.
COVID’s terrible lesson
If anyone needed a reminder about why healthcare needs to adapt as patients age, the experience of care homes during COVID provided a brutal lesson.
A single appalling day at a residential home in Somerset in February 2021, retold in Dr Pollock’s new book The Golden Rule, was symptomatic of much that was wrong with public health policy during the pandemic.
When Dr Pollock was called in, none of the regular team was on duty: most were ill or isolating at home. Dr Pollock and cover staff had no access to medical records for some residents, no access to TEPs (treatment escalation plans) for any of them. And many residents were deteriorating fast.
Dr Pollock is still angry that geriatricians were not involved in pandemic-planning meetings of SAGE (the Scientific Advisory Group for Emergencies). Infection control could have been transformed, she insists, by the simple recognition that older people with COVID tended to present with delirium and falls, rather than coughing and fever, for example.
‘I haven’t stopped thinking about that day and the only way to lay it to rest is to say there are so many things that we can do that would have made that situation better: this does not need to happen again.’
Among her many ‘Lessons from a pandemic’ is the plea that ‘all NHS staff have the skills they need to care for the ageing population’. She’s not asking for everyone to become a geriatrician but some small shifts in mindset –some ‘age-attuned’ thinking – might help.
Names not bed numbers
If ever a colleague refers to a patient by their room or bed number instead of their name, Dr Pollock gives them short shrift.
‘If one of my team says, “Can I talk to you about C6?” I say no,’ she says, uncharacteristically stern.
‘I understand that they’re busy and they can’t always remember the patient’s name. But you can say “the woman in C6 whose name I can’t remember”. That’s fine.
‘This is all about power and about being human. We are at a tipping point where medicine can become depersonalised very quickly now.’
‘We are at a tipping point where medicine can become depersonalised very quickly’
The Golden Rule, published by Penguin Michael Joseph, is rich with patients’ personalities and pen portraits, with affectionate attention to detail and first names. The person who ‘needs their face and hands wiping, their cardigan putting back on the right way round’ is also in the nearby photo, the ‘young woman in a sturdy panelled swimming costume, tossing her curls’.
Dr Pollock admits she’s guilty of stereotyping, too. When elderly Bill tells her he was in manufacturing, she assumes ‘bread, bricks or shoes’: he made particle accelerators.
The cover team was helpless to know what was normal for patients, what their wishes were, even whether they had family. ‘No one knows anyone,’ she wrote in painfully sparse prose.
One of the main problems on the day was IT-related, but this was compounded by many other issues, some whose impact and import only emerged later. Inadequate infection control, lack of PPE, the unintended consequences of isolating the dying and lonely.
But this is not just a plea that patients are treated as individuals; it’s also an insistence that in medicine one size does not fit all.
‘Frail older people are complicated,’ says Dr Pollock, ‘and things tend not to go well if you just apply algorithmic medicine or you try to give them medications that were trialled in younger patients with only one condition.’
Prescribing is a case in point: she increasingly sides with those who have ‘a waning enthusiasm for a medicine-based approach’ in the care of older people.
The book cites a large study questioning the focus on ‘aggressive blood pressure reduction’ in people with frailty over 75 and anyone over the age of 85, for example. Likewise, in caring for older people with depression, she first checks if their existing medication can lower mood and is much more likely to consider social prescribing, social connection, than anti-depressants by default.
She cites a UK Government-commissioned review into overprescribing in 2021 which found that about one in five hospital admissions in the over-65s is caused by the adverse effects of medicines.
‘As medical students we are all taught about prescribing,’ says Dr Pollock, ‘but we are not simultaneously taught about deprescribing: the two should go hand in hand. The British National Formulary gives you the indications, dose, side effects, contraindications and cautions. And I wish that it had, for every drug, a little section at the bottom about how to stop this medicine.’
Listen to patients
POLLOCK: We must listen to older people’s priorities
patients’ priorities, knowing what matters to them – and not presuming that, just because a treatment is available or the guidance recommends a particular procedural pathway, a patient necessarily wants it. For lives beset by so much uncertainty, it’s a small courtesy.
Provisos such as the one NICE (National Institute for Health and Care Excellence) makes, that its guidance ‘does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient’, are often lost in the small print, she feels.
‘A lot of what we are doing to patients adds absolutely no value’
The Golden Rule is not just for doctors: Dr Pollock would not presume to lecture other specialties anyway. But there is one point that modern medicine can sometimes ignore, she says: that as people age, their priorities change.
And this can be all the more true if they fear or fall prey to progressive conditions such as dementia, the leading underlying cause of death in England and Wales in 2022.
She lingers on the importance of listening to older
‘We have become so risk averse and so process driven,’ Dr Pollock insists. ‘A lot of what we are doing to patients adds absolutely no value.’
She gives the example of a patient in the care of the ‘Hospital@Home’ service she helped establish in Somerset where patients can receive acute care, monitoring and treatment without leaving their house.
‘If you and the patient decide together that they’d rather stay at home, they then do not need to see two paramedics, a triage nurse, a junior doctor, consultant, a radiographer and porter and HCA, a cleaner and social workers, and they don’t spend weeks and weeks in a rehab setting.
‘Futility is very subjective,’ she admits. But something needs to change. She quotes an OECD report from 2016 which estimated that up to 20 per cent of healthcare activity globally is of no value to the patient. She thinks that’s an underestimate.
‘Let’s stop the circus. Let’s pause for a moment and
KELLY
JAMES
think about what matters. What are your goals? What are your hopes and wishes?
‘This is absolutely not about denying people treatment. It’s about getting the right balance between making sure people are offered appropriate treatment and not assuming they want everything that’s on offer.’
Quality not quantity
In The Golden Rule we meet Wes who is very ill but wants to be at home with his wife and familiar things. Dr Pollock and her nurse colleague make him comfortable but cannot stay with him, and she ponders the risk of him dying before the next nurse arrives. The greater risk, she concludes, is that he will be admitted to hospital and die there. ‘We are seeing risk in the wrong place,’ she writes.
saying it. But when you start asking the questions about what this patient would actually want us to be doing, you often hear a completely different story. You have to pin your ears back and listen and actively ask those tender questions. I need to approach people with kindness and with an open mind, wanting to hear what’s important to them.
‘It’s about making sure people are offered appropriate treatment and not assuming they want everything that’s on offer’
‘But I do spend a lot of my time stepping out of the way of death who’s galloping towards my patient. Allowing somebody to have an unassisted death if they want that is really important. I get my best thank you letters from families who contact me after someone has died because we’ve got it right for them.’
Inevitably, death and dying feature frequently in Dr Pollock’s work and in her book – and talk of treatment options necessarily turns to resuscitation and TEPs.
She is no advocate of assisted dying but she is intentional about avoiding unnecessary treatment, especially in the final stages of life. She worries modern medicine leaves many doctors and patients’ relatives feeling there’s ‘an absolute obligation to prolong life’, when GMC guidance explicitly states that this isn’t the case.
She thinks people might be spared some of their distress in choosing a DNR (‘do not resuscitate’ order) for a loved one if the prognosis for older patients undergoing CPR were more widely known.
Within living memory, she says, ‘really frail older people didn’t come to hospital: nobody would have dreamt of sending them in. Their family doctor, who knew them and their family, would arrange for them to have a peaceful death at home. Then we moved all dying into hospital.’
‘Profound connections’ Society is ageing, and ageing is changing. What happens if trans patient Josie develops dementia and forgets her chosen gender? Dr Pollock asks. What kind of medico-ethical conundrums might a child with four mums (lesbian parents, an egg donor and a surrogate mother) present?
Medicine will need to wrestle and move with the changes. But it must not lose sight of the ‘golden rule’ of her title: ‘Do as you would be done by.’
This is about kindness, showing respect and recognising the small, human things that make for ‘profound connection’, ‘often a moment of physical contact – my patient’s hair had fallen across her face and I would smooth it with my thumb’.
‘When you start asking what this patient would actually want us to be doing, you often hear a completely different story’
She recognises some patients do want to live as long as possible – because this is not about denying people treatment when it’s wanted – but for many the priority shifts ‘from quantity to quality of life’.
The key to getting things right is what Dr Pollock calls ‘front-loaded time’ – taking sufficient time early on to discuss patients’ goals and priorities. Current pressures raise many barriers to this – staffing levels chief among them – but courage and honesty are needed too.
‘Often people won’t say it, or the person with dementia can’t say it and there’s a fear or shame for their family in
But there’s also a warning embedded in the golden rule. How we treat older people today and our attitudes to them will affect their ageing – because ageing is ‘a deeply social and psychological process’. And our attitudes to ageing and the aged will shape the care that we receive when we join the ranks of ‘older patients’.
The good news is that geriatric medicine is now oversubscribed; the bad news, there are not enough posts for all the trainees choosing the specialty today. Dr Pollock is still grateful to an early boss at the Royal London Hospital, when she was a junior, who hoped she ‘wouldn’t be offended’ if he suggested she might consider geriatrics.
Her final message which resonates long beyond the last page is: ‘We are the ageing population.’ And by implication: we’re next.
BOWIE:
Gave an eloquent tribute to singlehanded practice 25 years ago
FITTON: Associate GP scheme made single-handed practice possible
DR FINLAY’S WORLD
Twenty-five years ago, an influential book about single-handed GP practice captured a way of life which was already beginning to vanish. A new exhibition revisits the challenges – and some of the original doctors. Jennifer Trueland reports
‘I‘It’s difficult to get staff. It can be difficult to get a locum, so you can be a bit isolated on your own’
’m not sure what the future of single-handed practice will be. I still maintain that single practice is how medicine ought to be. It is about the art of medicine, having time for your patients and not being bogged down by audit projects, guidelines and all the paperwork that has bedevilled the health service in recent years. For me, this is the ideal way to practise medicine.’
So said Susan Bowie in 1999. As a GP in Hillswick, Shetland, she was one of 46 doctors interviewed about living and working in some of Scotland’s most remote and rural areas. This resulted in the book Single-Handed, which was essentially a snapshot of a way of life which was already beginning to vanish.
Accompanied by black-and-white portrait photographs by artist Rosie Donovan, the interviews, conducted by John Bain, then professor of general practice at the University of Dundee, reveal the challenges and the joys of single-handed practice – including 24-hour responsibility for out-of-hours care, and, in one case at least, the need to perform emergency surgery on a sheep caught in barbed wire just outside the GP’s garden.
Now, to mark its 25th anniversary, SingleHanded has been revisited in an exhibition on display in St Margaret’s in Braemar in Royal
Deeside (just along from Balmoral). Called Dr Finlay I Presume?, the exhibition shows photographs, videos, artefacts and interviews which provide an insight into the history of remote and rural general practice, as well as exploring what it means today. Three of the original participants, including Dr Bowie, who is still practising, were re-interviewed for the new exhibition, as were the GPs who cover the patches of the original 46.
‘There is no doubt general practice has changed hugely in the last 25 years,’ says Colin Hunter, a former chair of the Royal College of GPs Scotland, who wrote the introduction for the original book. ‘But I think the changes in remote and rural general practice largely mirror the changes in general practice everywhere. For example, continuity of care is a hugely important issue for general practice and one of the jewels in its crown, but it has become increasingly difficult right across general practice, [if for example] you’re in a remote area where you are scraping to get locums to provide care, then continuity of care doesn’t really exist.’
Rota system
One of the interesting things about the exhibition is it showcases the many different ways general
HUNTER: Changes in remote practice mirror changes everywhere
practice has flexed and adapted to meet changing circumstances. For example, in Orkney, the health board reorganised care on the outer islands after all the single-handed practices became vacant with no credible applicants for more than two years. Now there is essentially a rota system, where multiple practitioners are appointed to each island, working in rotation with handover times built in. Typically, a GP will work three weeks on (24/7) and then six weeks off-island. Since 2015, NHS Orkney has recruited every time it has advertised island GP posts.
Out of hours is a big theme in the exhibition. It was not until the arrival of the 2004 GP contract that GPs were able to relinquish 24-hour responsibility for care and the pressure could be relentless. In the original 1999 interviews, many GPs spoke about the challenges of being on call all the time and the boon of having the help of an associate GP (a GP employed by the practice), which was then a relatively recent development.
For example, Janet Fitton, who, as GP in Strathdon was one of the original interviewees, said at the time that she didn’t think she would have considered single-handed practice without the associate scheme.
Her successor Paul Ipson joined the Strathdon Practice as associate GP in 2011, taking over the contract in 2016 (not including out of hours). He still holds the contract today, in contrast to the many practices which are now effectively run by the local health board, which has its pros and cons.
The exhibition at St Margaret’s, Braemar, is open daily and runs until 30 September. Those attending are asked to fill in a survey about their own experiences of general practice as part of wider research projects associated with the exhibition.
CRUICKSHANK: ‘Glad I came here 30 years ago’
A story of dedication
Donald Cruickshank retained 24-hour responsibility for his patients for 30 years
Recruitment is a theme that stands out in the exhibition, with many of the GPs interviewed describing the difficulties of persuading young doctors a career in rural general practice is for them. Certainly, the Dr Finlaystyle role with 24-hour responsibility for care is nigh-on impossible to recruit to.
The GP practice in Braemar, a short walk from the exhibition, is a case in point. Although the singlehanded GP, Donald Cruickshank, wasn’t part of the original book, he is interviewed for the exhibition, and his own experience exemplifies how much general practice has changed. Having joined the practice in 1994, he decided to keep responsibility for out-of-hours care even after the introduction of the 2004 contract, with the help of willing associates.
‘I’m glad I came here 30 years ago, and I wouldn’t have missed it for the world,’ he is quoted as saying in the exhibition. ‘It hasn’t been easy. There are times when it has been quite challenging. But it has been a whale of a time.’
Last year, however, the associate was no longer prepared to provide out-of-hours cover (after 10 years) and, despite the best efforts of Dr Cruickshank and the community, it wasn’t possible to recruit. The practice is now the responsibility of the health board and Dr Cruickshank is helping to manage the transition.
RCGP Scotland chair Chris Provan says the dedication brings home the dedication of a generation of singlehanded GPs. He says: ‘Donald Cruickshank’s story is very remarkable – many years of on call, and it wasn’t until he was well-established that he even got an assistant, so he knows his patients very well indeed.’
He adds that recruitment to such roles has become vastly more difficult.
NYE’S LOST LEGACY
Nye Bevan is said to have wanted a comprehensive occupational health service, but it never happened, leaving many in smaller companies or precarious jobs without access to this day. Might that finally be about to change? Jennifer Trueland reports
Occupational medicine was at the very heart of the inspiration for a national health service, but somehow it has been left behind.
Legend has it that Labour politician Nye Bevan partly based his model of an NHS on the Tredegar Workmen’s Medical Aid Society, a scheme providing free healthcare to workers in his hometown – yet occupational medicine was not part of the eventual blueprint.
Now the BMA and other campaigners are fighting to rectify that omission and, some 76 years after the NHS was founded, are endeavouring to give occupational medicine a far greater role in promoting healthier communities in the workplace and beyond.
‘It’s not one of the core NHS services, which I think is really weird,’ says Kathryn McKinnon, who chairs the BMA occupational medicine committee. ‘I’m not saying that occupational medicine is the granddaddy of the NHS, but part of what drove Nye Bevan back in the 1940s to think of providing universal access to healthcare, free at the point of delivery, were coal miners. Welsh pits would have pit doctors. Those populations which had pit doctors – who would also look after the families – had better health than those who had to self-fund access to GPs.
‘That was one of the drivers, so the fact that –in part – occupational medicine triggered or was part of the thought process that resulted in the NHS, [but] was then not included as a core part of the NHS, is enormously regrettable.’
Pilot schemes
At last year’s BMA annual representative meeting, representatives backed a call for a universal system for occupational medicine in the UK in the NHS. Before the general election was announced, it looked like this might have been the direction of travel for the Government, too. In May, the departments for work and pensions and health and social care announced a £64m pledge ‘to help people stay in work’ and said there would be 15 ‘Work Well’ pilots across England to deliver joined-up work and health support. This followed an announcement on welfare reforms from the then prime minister Rishi Sunak, whose plans to ‘modernise’ the benefits system included a review of fit notes to prevent people falling out of work and on to long-term sickness benefits. Other steps include the appointment of Shriti Pattani OBE as national clinical expert in occupational
medicine for NHS England.
A national occupational health service is long overdue, says Dr McKinnon, who is a consultant in occupational medicine and director of medical education at Health Partners Group.
‘It remains the case that it’s not the job of the NHS to provide occupational medicine as a specialty,’ she says. ‘It’s down to the employer to provide access to these services. If you work in the NHS, you will certainly have access to it, but only about 50 per cent of the working population of the UK have recourse to specialist occupational medicine services, which is a shame, because we’re very good at what we do.’
Investment in occupational medicine more than pays for itself, she says, in terms of reduced sickness absence, increased productivity and reduced staff turnover. ‘If you’ve got precious, scarce skilled resources, but they just happen to be packaged with an individual who has got some health issues, if the individual is lost to the workforce, those skills are lost to the workforce.’
The case is even more compelling because we have an ageing workforce and people are developing multi-morbidities at a younger age, she adds. ‘The likelihood of those skills being lost to the UK workforce is increasing, so there is a very clear value proposition for occupational medicine services. It is just that it is up to the employer to fund it because there is no universal access through the NHS or another statutory body.’
Universal access call
The BMA would like to see all workers in the UK – including those seeking work, and those who aren’t in work because of a health issue – having access to specialist occupational medicine services. This includes preventive services as well as assessment and support for people who already have a health issue. ‘What has been suggested [by the UK Government] is a great step forward, but it is not really what the BMA has been advocating for a long time, which is universal access to a comprehensive occupational medicine service for all of the UK workforce.’
There is a ‘dearth of detail’ in the pilot plans, she says – for example, it is not clear who will deliver the services, and who will be eligible.
‘It’s not one of the core NHS services, which I think is really weird’
‘There is a very clear value proposition for occupational medicine services’
BEVAN: Inspired by a scheme in the mining community where he grew up
The SOM (Society of Occupational Medicine), which supports occupational health and wellbeing professionals, including doctors, is also calling for a national occupational health strategy, which would include universal access to occupational health. SOM chief executive Nick Pahl says this would boost the economy by reducing the number of people not at work owing to ill health.
‘We’ve been talking to the Treasury and have shared our proposals with them, and also with [chief medical officer for England] Chris Whitty and advisers in Number 10 [Downing Street]. I think there has been real interest in our proposals, which are all costed out, but the problem is that this issue sits across a number of government departments, including health, DWP [Department of Work and Pensions] and business, so sometimes there is a struggle for the issue to be driven by ministers.’
He worries that the general election has slowed a growing ‘head of steam’ in favour of occupational medicine, but the society continues campaigning in the hopes that the new government will give it priority.
Future hopes
Under the SOM’s plan, larger companies would invest in their own occupational health schemes, while the national service would be there for everyone else. At the very least, the society would like to see an occupational health consultant in each ICS (integrated care system) in England and equivalents in Scotland, Northern Ireland and Wales.
He is confident the workforce will be there to deliver it, although he accepts there need to be more training places for doctors to specialise in occupational medicine and investment in training more generally.
While he welcomes the success of the Englandbased Work Well plan, he believes it doesn’t go far enough. ‘You need it to be bottom up and top down – you do need that national clinical director, and you need a delivery model that ICSs and health boards will pick up on. Work Well is a start, but from our perspective, it doesn’t have that clinical governance robustness and occupational medicine wraparound for people to feel that it is a clinically secure service.’
With growing numbers of people out of the workforce and the cost of disability benefits increasing, the cost to the economy more widely is significant, he adds. ‘Any government will have to take that seriously. With the election, you might lose a bit of momentum, but fundamentally they’re going to have to deal with it, and we’re ready when they are.’
A good day’s work
Occupational medicine can bring huge benefits to individual patients and society, says Kathryn McKinnon, who first became involved while a GP in the military
Occupational medicine is a fascinating specialty, says Kathryn McKinnon, chair of the BMA occupational medicine committee, although she herself fell into it almost by accident.
‘I was originally a GP in the military, and a huge component of that was a small, niche part of occupational medicine, which is fitness for role, or fitness for task. So, I was very exposed to occupational medicine over the course of my military GP career and decided to make the change and move into higher specialty training.’
She worked as an occupational physician for the military for four years before re-entering civilian life and hasn’t looked back. ‘What I like about it is that it is hugely variable and broad-based and very much based around consultation with patients. I spend most of my clinical time talking to people, which is one of the reasons I wanted to be a doctor in the first place.
‘I also think as an occupational physician, you have the capacity to help not just the individual sitting in front of you – hopefully giving them advice on their medical circumstances and the effect of those on their work – but you also have the capacity to help whole cohorts or populations of individuals.’
There are essentially three parts to occupational medicine, she says: preventive; assessment; and treatment or therapeutic. ‘With the preventive side, if you can manage hazards, risks and hazard exposures you can reduce the risk of developing a work-related health issue for a whole cohort of workers – by, for example, reducing noise exposure, or chemical exposure, or exposure to respiratory hazards.
‘We can – along with our “hygiene” colleagues – quantify the risk and advise the employer on control measures. It sounds quite boring and technical,’ she says. ‘But actually we stop people getting poorly in the first place.’
The other elements of the job support people who are unwell, either to stay in the workplace or to return to it. ‘That’s where the assessment and advisory role comes in, advising on fitness for role, whether it is pre-employment or whilst in employment, and on adjustments, support and/ or rehabilitation, to try and keep people at work doing as much as they can, and trying where we can to give advice
that helps them overcome any detriment they experience as a consequence of their health issues.’
Where occupational medicine differs from, say, general practice services, is that it is very much tailored to the consequences of an individual’s health issue, rather than focused on the diagnosis and treatment needs.
‘We make a holistic assessment of the individual,’ she says. ‘We will look at their function and the impact of any decline in function on their work activities and we will then try to give advice as to what medical or workplace interventions are going to be beneficial. In lots of cases, diagnosis doesn’t really matter.
‘If you’ve got a wobbly knee, for example, does it really matter if you’re an office-based worker who can work from home? Possibly not. But it would matter if you drive a bus, for example. So, in terms of whether an individual can do their job, the consequences [of the wobbly knee] may well be minimal or trivial.’
The ability to work is not regarded as a ‘health outcome’ in the NHS, she adds – meaning that conditions that stop people working aren’t necessarily given priority. ‘You can have a relatively low-level issue, which is a complete showstopper from a work perspective, but it doesn’t meet the threshold for urgent or even soonish treatment from the NHS, so people lose their jobs because they can’t get timely treatment. That’s not a criticism of the NHS – it’s just where we are.’
There are, she says, many, many people with physical or mental health difficulties who would love to be in the workforce but who are currently let down by a lack of access to occupational medicine services – which is devastating for individuals, but also terrible for the economy.
‘What we should be doing is giving people the support they need to do what work they are able to do, rather than penalising or criticising individuals for not being at work. The reasons why people aren’t at work are complicated. Generally speaking, work is good for you and it’s one of the greatest social determinants of health. Our role is to make sure that people can do what they can and can be supported to do as much as they can.’
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Your BMA
We need to change, and it needs to start with our behaviours
At the conclusion of this year’s BMA annual representative meeting held in Belfast last month, I spoke to representatives about the desperate need to change behaviours and culture among elected members of the BMA.
During the two-day event I experienced challenging behaviour, which was different from the experience of my white, male colleagues on our senior leadership team. And, as reported in the media, one or two members chose to disrupt a speech by a Jewish doctor who was speaking out in defence of the Palestinian community in Gaza.
Problematic behaviours are not new to the BMA and ARM but I’ve been involved since 2013 – from being on the joint agenda committee to being representative body chair – and, in my opinion, these issues are growing worse. Meeting in a large group after a long time apart and debating issues, which we are all passionate about can get the better of people.
While these problems are not unique to the BMA, we do want the BMA to be unique. We want the BMA to be unique in how welcoming it is, how understanding and thoughtful it is and in how diverse it is.
The BMA is doing everything it can to stop behaviours escalating – we have an independent code of conduct and resolution process, and we offer management and leadership training, mentorship training and active-bystander training to our thousands of elected members.
We also know there is an inherent problem in the NHS when it comes to sexism, racism, ableism and
homophobia and transphobia. We know the NHS is often a toxic working environment – it is overflowing with these issues. Our BMA membership is approaching 200,000 members so it makes sense that some of these same themes would be apparent in our organisation. It would be naÏve to think otherwise – to think that as soon as people walk through our doors those problems are magically going to stop.
We also have a problem when it comes to elections. We know women, people from ethnic-minority backgrounds and other marginalised and underrepresented groups are less likely to stand. But we also know, if they do stand, they have a slimmer chance of getting elected. We have tried to change this and have moved the dial in some ways but we must press on.
Behaviours have often been deeply challenging for me personally, in this role. And it is not just at ARM. I have had two children while in this position and I have sacrificed a lot to do the best job I can. After my second pregnancy I returned to BMA work after just a month – and even in that month I attended meetings and responded to emails. I didn’t want the pressure of my role and responsibility to fall on others and the association supported me to do this. But in some of those meetings – with a baby of just a few weeks old strapped to me in a sling – I experienced people raising their voices at me, moving close to the screen on Teams calls in an intimidating fashion and, during difficult conversations about governance and processes, words such as ‘disgusting’ were used to describe me.
The truth is, the BMA can do everything in its power to drive change – the processes we’ve put in place, actively calling people out, and considering quotas and ARM referees will all make a difference – but first and foremost it is the behaviour of members that needs to change.
We must be better – from how we vote to how we speak to peers and colleagues. We must be better so the BMA can advocate for our profession, patients and society as powerfully as possible.
To get in touch, write to me at RBChair@bma.org.uk or @DrLatifaPatel
Dr Latifa Patel is chair of the BMA representative body
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