Wales: ‘Patients should have access to the same drugs’
Irfon Williams’s voice cracked as he described how he packed his bags, left his partner and five children in north Wales and set up a temporary home across the border in England to get the treatment he needed to save his life.
“I’m a proud Welshman and I spent 25 years working in mental health in the NHS. It was terrible to think I couldn’t be looked after in my country,” he said. Williams explained that the treatment he needed to treat his bowel cancer cost £15,000. “Being told I couldn’t get those drugs made me feel worthless.”
Williams is one of many patients from Wales who cross into England in search of the treatment or standard of care they feel they cannot access at home. “I didn’t want to do it. I didn’t like doing it. But I had no choice,” he said. “Patients across the UK should have access to the same drugs, the same treatment, the same care. We don’t have that at the moment.”
In the run-up to the Welsh assembly elections in spring, these sort of stories will be seized on by opponents of the Labour-controlled government in Cardiff.
Because health is devolved, the Welsh government can do things differently from England. It has grabbed headlines and plaudits for innovations, such as introducing a transplant scheme in which people are deemed to have agreed toorgan donation unless they opt out, and launching a “flying doctors” servicedesigned to get medics to emergencies by helicopter or fast car no matter how remote the spot.
The government spends just under half of its budget on the NHS and has worked hard in the face of swingeing cuts to the funding it receives from the UK Treasury to protect social care.
But every unfavourable report, every missed target gives Labour’s opponents a chance to attack – with David Cameron once, notoriously, claiming Offa’s Dyke, the ancient boundary between England and Wales, was the“line between life and death”.
It was an intensely political event. Certainly, many patients spoke about the wonderful care they had received from nurses, doctors, surgeons. But then there were people such as Annie Mulholland, who moved from Cardiff to England when she contracted ovarian cancer.
Like Williams, the drug she believed would help her was not available in Wales. So she used her daughter’s address in London to access treatment under theCancer Drugs Fund.
“We pay the same taxes as in England, why shouldn’t we get the same access to treatment?” said Mulholland. Her experience led her to become a prominent health campaigner and she says many people have contacted her to ask how they can access treatment in England.
“People are desperate,” Mulholland said. “Not just people with cancer. I’ve been approached by heart patients, people who need knee and hip operations.”
Her mention of hip operations was timely. New analysis has revealed that patients are waiting much longer for some procedures in Wales than in England. The average wait for a hip operation was the most striking – 197 days in Wales compared with 75 days in England in 2014-15. But other procedures were also taking longer in Wales. A person needing a cataract operation in Wales can expect to wait an extra 53 days compared with a patient in England; for a heart bypass the wait is an extra 54 days.
But is it really as bad as the opposition parties and patients such as Mullholland believe? Are people leaving Wales, the land of NHS architect Aneurin Bevan, in their droves for treatment in England?
The Nuffield Trust, the independent charity specialising in the analysis of healthcare, has tried to act as referee between the champions and critics of the NHS in Wales. It has concluded that Welsh patients do have cause for concern over waiting times – but suggested it was doing better than England in other areas, such as getting people back home from hospital, perhaps because of its efforts to protect social care. Its bottom line was that it was almost impossible to fairly compare the systems, one catering for a population of 54 million, the other 3 million.
A report from the Welsh affairs committee last year concluded that in 2012-13 about 50,700 Welsh residents travelled to non-Welsh providers for hospital care, while 10,370 non-Welsh patients were admitted to Welsh hospitals. On the other hand, it said some 20,000 English people were registered with Welsh GPs – and 15,000 Welsh people with English GPs.
People such as Williams are in addition to these figures – nobody knows how many like him have crossed the border for treatment that was not available.
Over recent years the Welsh government has become used to having to defend its health record.
On cancer treatment, it insists it is making progress. It says the number of people with cancer is increasing – 20,000 people are expected to be diagnosed with the disease this year but the mortality rate for patients under 75 has fallen by 14% over the past decade.
Ministers are furious at the idea that people are fleeing to England for better healthcare, insisting it is a two-way street. While people from north Wales may travel to specialist centres in northern England for cardiac surgery, many burns victims from south-west England travel to south Wales for expert treatment.
Vaughan Gething, the deputy minister of health in Wales, stuck his head above the parapet to attend the cancer patients’ event at the Pierhead building. Speaking afterwards, he hit back at criticism.
“The sustained attack that NHS Wales has been under has had a real impact on staff,” he said. “Every independent analysis says you can’t simply say one care system is better than another. You never hear that from David Cameron or [health secretary] Jeremy Hunt. It’s about throwing more insults. NHS in Wales sees more people than ever before, treats more people than ever before and treats them more successfully than ever before.”
Sharon Stevens, another cancer patient who was at the event, sees it differently. She lives in north Wales but chooses to go across the border when she needs to see a doctor. “I’ve lost confidence in the health service here. I don’t think they always tell you all the options available. It makes me very sad.”
Scotland: concern for the nationwide health service
Chris Sheridan, a psychiatry registrar who works across the housing estates of Dundee and the rocky, tree-lined glens of Perthshire, is watching the junior doctors’ strikes in England with some anxiety. The hospital picket lines may be several hundred miles away but the conflict has potentially serious repercussions for Scottish doctors too.
For Sheridan the escalating conflict between Jeremy Hunt, the health secretary, and junior doctors working in England’s hospitals is evidence that the once universal national health service, where doctors can expect to seamlessly move from Shetland to Shrewsbury, is breaking apart.
Until now, doctors across the UK trained and worked to nearly identical contracts agreed by all four governments; Scotland’s famous medical schools train doctors without any reference to borders. But there is no junior doctors’ strike in Scotlandbecause, like the Welsh, Nicola Sturgeon’s government is refusing to match or follow Hunt’s proposals.
If Hunt wins in his battle, hospital doctors in different parts of the UK will for the first time have noticeably different contracts – working more challenging and stressful shifts for different rates of pay in England. Sheridan, chair of the British Medical Association’s Scottish junior doctors’ committee, believes this raises doubts for the first time about whether Scots will want posts in England.
“I have friends in England [and] it’s really interesting to hear the chat from them. People are really angry. They’re really worried about it. There’s a fear that it could get bad,” he said. “Some people have thought, should I continue training here at all or should I go somewhere else to work?”
Peter Bennie, chair of the British Medical Association in Scotland, believes Hunt’s plans would increase a slow but significant break-up of the once closely integrated UK NHS – an institution that most defines Britishness, into wholly separate services.
“As we sit here, there are medical students at all five Scottish universities who will end up working at hospitals in England,” he said. “They’re now seeing a new contract imposed on them with no say on that at all … The solution would be far more reasonable behaviour from the government and a realisation that there are consequences across the UK.”
Bennie points out that even Alex Salmond, the former Scottish National party leader and first minister, wanted to protect the concept of a single, pan-UK system for doctors, and a shared NHS, if he had won the 2014 independence referendum.
Cross-border referrals – almost entirely of Scottish patients travelling to English centres, remains critically important for some highly specialised, niche treatments. The NHS in Scotland says it has no “robust” data to release on this, preventing a proper study of its costs, but NHS England data shows that in 2014-15 75,705 Scottish patients were sent south for treatment.
The latest strike on Wednesday is a golden opportunity for NHS Scotland to lure anxious or alienated English doctors north: the strike takes place on the same day as the start of the annual month-long and UK-wide recruitment drive for junior doctors, where hospitals compete to attract new talent to train as senior consultants, GPs and specialists.
Catherine Calderwood, Scotland’s chief medical officer, and Bennie are immensely protective of the NHS in Scotland, where medical prescriptions, as in Wales but unlike in England, are free for all patients, at a cost of £1.2bn a year – including £10m a year on free paracetamol. In part because of its relatively small size and close-knit profession, they believe Scotland has preserved the service’s original ethos by stressing collaboration, shared expertise and mutual aid.
Health is still a major political battleground in Scotland: Sturgeon’s government has been under intense pressure from opponents for poor A&E waiting times – now improving after a mild winter, and underfunding of the service.
Although Scotland’s health is improving, and in some areas such as hypertension and heart disease, dramatically so, “it’s actually extremely difficult to show you evidence that there’s a very clear difference in outcomes across the four different health services, even though they do operate in different ways now”, Bennie said.
The latest pan-UK study of NHS services by the Nuffield Trust published in April 2014 found that although England was doing marginally better on “amenable mortality” – deaths that can be prevented by medical treatment – life expectancy and ambulance response times, overall the four countries’ differing systems have made little difference to long-term national trends.
NHS services in Scotland are far from perfect. Cancer specialists are uncomfortable with the failure of NHS boards to buy an expensive but highly effective piece of radiotherapy equipment known as a stereotactic ablative radiotherapy machine.
Mike Lavelle-Jones, president of the Royal College of Surgeons of Edinburgh, says Scotland has been slow to invest in innovative and highly effective robotic surgery equipment. A “da Vinci” urology robot at Aberdeen Royal infirmary was purchased through a private donation and fundraising.
Dr Richard Simpson, Scottish Labour’s shadow minister for public health and a fellow of the Royal College of GPs and Royal College of Psychiatrists, accuses Scottish ministers of failing to take effective action on delayed discharges from hospitals, particularly with elderly patients, a problem known as bed-blocking. In November last year, there were 50,000 “bed occupied days” in Scotland, compared with 160,000 in England – in a population 10 times larger than Scotland’s.
Calderwood, an obstetrician before becoming CMO, says Scotland’s collaborative culture has also set new thresholds for the rest of the NHS to follow. An integrated system to tackle stillbirths in Scotland has seen a dramatic cut in deaths, down from 300 in 2012 to 235 in 2014. So in that year “65 more parents took home a baby than would’ve done in all the years pre-2014”.
“So we’ve cut and pasted that to England; Jeremy Hunt’s recent announcement on reducing stillbirths, I think Scotland has got there first. I suppose that’s a very good example of where that small country, that spread of people who know each other, the units know each other. [We] hear of good practice and can spread it quickly.”
Northern Ireland: ‘Mental health services are woefully inadequate’
Northern Ireland’s peculiar health pressure is the large numbers of people who suffer from longstanding illnesses – some of which date back to the Troubles.
The local health service has to cope with the highest rates of post-traumatic stress disorder (PTSD) in the UK, costing the NHS millions every year.
Living in poor areas that were at the sharp end of the Troubles reduces life expectancy significantly, according to the latest survey of health outcomes in the province.
For those living in some of the most deprived parts of Northern Ireland, 39% of both men and women reported that they had a life-limiting longstanding illness.
Pressure on Northern Ireland’s health service is exacerbated by the impact of poor mental health outcomes in the province. The study estimated that the cost of caring for those with mental health problems such as PTSD is about £47m a year out of the local NHS budget.
Dr Deirdre Heenan, a University of Ulster academic and health expert who was commissioned in 2011 to write a comprehensive review of the local NHS for the then health minister, said what was needed was a world-class mental health system for Northern Ireland.
“Research carried out by Ulster University concluded that there was a very high level of conflict-related trauma exposure with associated mental health implications and significant economic consequences. But at present mental health services are woefully inadequate, disjointed and reactive rather than proactive,” she said.
In a separate report, co-written by fellow University of Ulster academic Colin Anderson, Heenan said Northern Ireland had 25% more people with mental health problems than England and Scotland.
“There is a clear link between mental health and social and economic issues in Northern Ireland, and deprivation is a key variable dictating the degree to which the Troubles impacts on individuals and communities,” Heenan said.
The other heavy burden on the province’s healthcare system is the ageing demographic, which if anything is more pronounced than in the rest of the UK.
Before a cross-party political summit on the local NHS to be held at Stormont this month, a report by the Northern Ireland Confederation – a body that represents 50 health and social care organisations – has warned of additional pressures on the health service.
The report notes that the number of people over the age of 65 in the province will increase by 25% over this decade and the population over 85 will rise by nearly 50%. It also found that local NHS costs are rising by about 5-6% each year.
“We can have a worldclass health and social care system, but we can’t do it if we keep doing it the way we’re going,” said the confederation chairman, Colm McKenna. “Because of an ageing population, demographic changes, the need is growing by 5-6% per annum – we can’t continue with that.”
Health is one of the departments under the direct control of locally elected devolved ministers. One of the major changes introduced into the local NHS by former Ulster Unionist health minister Michael McGimpsey was for free prescriptions for all patients.
Given that Northern Ireland is the only part of the UK that shares a land frontier with another EU state – the Irish Republic – there is significant cross-border trade in terms of healthcare on the island.
Last year Northern Ireland’s then health minister Jim Wells accepted proposals for a single all-Ireland heart surgery centre based in Dublin. All child heart operations are now carried out at Our Lady’s children’s hospital in Crumlin, south Dublin. Until that decision was made, many complex child heart operations had to be performed in English hospitals.
When it comes to dental care, the “traffic” goes from south to north, with some dentists in Northern Ireland claiming up to 50% of their patients now come from the Republic. The savings for private patients from the south are considerable, with the cost of a bridge unit being about £295 in Armagh city in Northern Ireland while the same procedure can be up to €850 (£697) in Dublin dental practices.