The healthmatters blog; commentary, observation and review
Spending taxpayer’s money sometimes gives rise to much indignation, at times hilarity, and even incredulity. One recently reported lists of expenditure tell us much about our views of deserving and non-deserving recipients and the sacred ‘cows’, in ideological terms, of medical prominence and consumer choice.
One that may be particularly relevant to readers of Health Matters is the list of items spent as part of Personal Health Budgets by citizens whose long-term health problems or disabilities were such that NHS professionals agree that they could spend public money (NHS) on items to improve their health and wellbeing outcomes. These ranged from music lessons, to Wii games, consoles (computer exercise games) to the one payment of £7.34 for a ride on a pedallo. As the Guardian newspaper put it, ‘Holidays, a summer house and satnav, courtesy of the NHS’ (1 September 2015 page 7). The Guardian, drawing on the investigation by the GP focussed magazine Pulse that had acquired the itemised lists from CCGs by a Freedom of Information Act application, painstakingly explained to its readers that Personal Health Budgets were a matter of entitlement to people receiving continuing healthcare and had to be approved by the local NHS team. It contained a quote indicating the complexity of the process, ‘(people) have to meet their agreed health outcomes aligned to their assessed health needs’. However, the reaction to Pulse’s findings of total £120m expenditure on personal health budgets was intriguing.
The Guardian quoted the Deputy Chair of the British Medical Association, Richard Vautrey, referring to the risks of such sums (presumably not the £7.34 on the pedallo) as destabilising other provision… it could ‘jeopardise a whole service’. Of course this may be exactly what people would want to do – why not music lessons instead of a place in a day centre? Why not aromatherapy instead of a visit to a support worker? But the telling small word from this BMA representative is that such choices were ‘whims’. No matter the thinking about goals or outcomes, no matter that well paid professionals have to help plan the support package, work out its outcomes, review and monitor the effects and expenditure, the matter of patient choice is a ‘whim’. So should we expect to see NHS Choices become NHS Whims, as that is how some in the medical profession see choice? And forget ‘expert patients’ too.
If personal health budgets are to be trusted as a way of helping sick or disabled people recover or to increase or even just sustain their quality of life (wellbeing is the generally fashionable term for this) then they need to be trusted. Clearly doctors who talk of them as ‘whims’ are unlikely to give patients the confidence in their potential benefits. For those patients and their carers who are already finding personal health budgets make a positive difference to their lives, their trust in their medical practitioners is likely to reduce, pushing doctors back into a cupboard as simply there for prescriptions since they are so dismissive of what matters to their patients.
Outraged of Westminster, 9th September 2015
The NHS is on the brink of collapse, says the Observer (September 20th), quoting former secretary of state Norman Lamb. The catastrophists are back in business, having failed so dramatically to save the NHS with a Labour victory in May. Or was it the other way round, the catastrophists failed to save Labour with horror stories about the NHS’s imminent demise.
The actual precipice is two years away, says Lamb, which is a very, very long time in politics, so we need not bail out and pull the ripcord just yet. Given the streams of money being found to salvage over-spent hospitals, the collapse may be pushed even further back. Or it may change direction and do some serious damage to general practice, which is now seeing the funding it needs to run a 7 day a week operation tipped into the bottomless pit of hospital spending. This diversion of resources is nothing new, of course, but the demand for greater productivity is. We shall see. Keep your eye on that brink, Norman, the one on the distant horizon.
On the subject of catastrophists, let’s think about the Northern Trust running two fully functioning District General hospitals six miles apart. We say fully functioning, but they are struggling to run two adequate A&E services, partly because of budget constraints and partly because getting A&E staff to join and stay is hard. The situation was justified historically but now is barmy. Merger of the two hospitals is inevitable, and one will be down-graded to community or elective hospital status whilst the other becomes the treatment centre for emergencies. That should set off a wave of Save the NHS protests.
There would be less room for placard wavers on the margins of NHS politics had Labour and the trades unions been willing or able to work out how to influence policy in a nationalised industry with a gargantuan democratic deficit. Labour has been too busy with its elected local government councillors to work out a strategy for an election-free zone like the NHS, and the trades unions have been too busy with workforce problems to make an impact on NHS strategy – much to the delight of managers (who want to hog the policy role), professionals (whose organisations have a good grasp of how the NHS works) and politicians (who like to be in charge). Any dewy eyed Marxists buoyed up by the working class’s historic destiny as the ruling class of the future need only look at the NHS for evidence of the opposite.
News from Nowhere’ s moles became very jolly when screening expert Walter Holland declared that the NHS is wasting £450m a year on health checks or “mid-life MOTs” for 40-74-year-olds. They are a waste of time, widely ignored by patients and not based on sound evidence, he and his co-authors declared in the Journal of Public Health. This is not exactly news, but such an authoritative critique adds to the widespread discontent with health checks. The Department of Health continues to rebuff all criticism, as it must, but watch out for a quiet exit for this silly policy. It is only a matter of time.
Cambridge University Hospitals Foundation Trust has been put in ‘special measures’ after the Care Quality Commission rated it “inadequate”. (Health Services Journal 22nd September 2015) Inspectors found a “disconnect” between senior managers and frontline staff and said the Trust had “serious problems” which jeopardised patient safety. Cambridge University Hospitals FT is part of the elite Shelford Group of “leading academic healthcare organisations”. This is the first time a Shelford Group Trust has been rated “inadequate”. Some NfN informants have enjoyed the Trust’s discomfort, and the group’s too, on the grounds that there is a “disconnect” between leading academic healthcare organisations and the needs of the public. Words like ‘smug’ and ‘self-satisfied’ were heard, but contrary comments posted on the HSJ were enlightening. For example “If you require staffing levels at local level which you know there are insufficient staff nationally to meet, how is failing local organisations fair, ethical or helpful to patients? If you require financial balance when you know there are insufficient resources nationally how is failing local organisations fair, ethical or helpful to patients?”
Alzheimer’s Research UK has been doing a splendid job. First it planted stories in the media about a third of the population developing dementia, then its begging letter for donations for research to fight dementia landed on door mats. News from Nowhere asks the ‘so what’ question academics fear so much. All of us will die, and according to one source 40% of our deaths will be attributable to “progressive dwindling”, which wraps up dementia and physical frailty. It is all because we are living so long, for dementia is mostly a disorder of very old people. It is a short affliction, about three and a half years long on average, and other things – heart attacks, stroke, pneumonia – often carry us off before it can do so. Research efforts have failed to find a cure for the last two decades, and the pharmaceutical industry is giving up on unprofitable dementia research. Not that we want to spoil ARUK’s drama, because a cure may be just around the corner.
It is probably no longer plausible to claim we have 48 hours, one week or one election to save the NHS, but it does feel that in some sense we are at a significant juncture in thinking about the care system; a time for a fundamental rethink.
There are some things we don’t need to think about too much. There are some obvious fixtures that all but those on the fringes would agree on.
- Our healthcare service should be free at the point of need and funded predominantly through (progressive) taxation. (A big genuine question is why we think of social care differently.)
- We have a well-developed and mostly effective system of public provision of health care and there is limited scope and no economic rationality for its replacement by private organisations or for market competition being artificially introduced.
- Where decisions are made about health care resource allocation and priority setting then this must be through arrangements that are open and transparent and those making the decisions should be accountable through our established democratic structures.
- Care providing bodies which are publicly funded must be open and transparent in their decision making and must engage and consult with those who may be affected before making significant decisions.
- Patients have the right to involvement in their care and communities have the right to be involved in decisions about care services that affect them.
But even given a pretty wide area of general agreement in principle there is limited progress on making real all but the first bullet point.
But within the broad tent of agreement we are still faced with the need for a coherent answer to a few basic questions.
Should we have an NHS at all?
Why don’t we have a National Care Service alongside a National Education Service, and a National Housing Service? Why is remedial health care different? What glues health care into the rest of public services?
Is it really National, there are lots of local variations so what does the N mean?
What bits of our health does the H cover? Not public health.
Is it really a service or should the S now be for system?
What is the NHS for?
Mostly the NHS is thought to be for fixing illness. But maybe we want a wellbeing service which deals better with prevention and with broader care needs, with learning disabilities, with mental as well as physical health.
If the NHS as a major public body should it be an exemplar around good practice and should its contribution to public value be developed?
What is the NHS?
Most of the NHS is understood to be publicly delivered (through NHS Trusts and GP Practices), but much of it is not and never has been. Is the NHS made up of all bodies and organisations that deliver health services paid for by the state? Why are GP Practices which are bound to the NHS through contracts different from private organisations linked by the same (or very similar) contractual arrangements?
Is the planning/commissioning function part of the NHS? If it moved from CCGs to Health and Wellbeing Boards or was shared, is it in or out?
What are the boundaries of the NHS?
For historical but illogical reasons we have an entirely separate system for social care which is means tested and organised through local authorities and which is almost entirely privatised in terms of provision. But over time the boundary between the NHS and the rest of care is constantly moving – services that were free become means tested. Public Health is no longer within the NHS.
Does it matter? These are questions that don’t get discussed as even asking them tends to make some people cross. However it really is the time to think much more fundamentally about the NHS for two different sets of reasons.
First we are about to enter a new era. The NHS has always been separate in some sense – the fight to bring it firmly into the family of public services organised through local authorities was lost. In very general terms we had 4 decades of the initial Bevanite model for the NHS. This had some overall coherence as regards dealing with acute illness but was weak in terms of dealing with long term illness, had limited management, no real accountability, no public and patient involvement and poor and unequal access. It was probably inefficient in the way it allocated resources but we have no way of knowing as it was weak in terms of data and information.
We then had the era from the 1990’s which introduced both managerialism and marketisation, pretty well mixed up. It still left a separate NHS remote from other public service. It shifted the paradigm away from professionals and towards managers and (maybe) patients. Access and efficiency improved, regulation and public and patient involvement were introduced, planning (commissioning) was split from provision. This culminated in the Lansley proposals which were the first bold step towards an NHS that was a regulated market, with improvement driven through competition amongst providers and which opened the way to alternatives for funding and for a switch to an insurance system.
It is pretty clear the H&SC Act which emerged as a watered down and less coherent version of the Lansley ideas is not being implemented as conceived. All the evidence shows competition and commissioning does not really work and so the era of markets has ended. The Five Year Forward View which appears to be the current strategy for the NHS does not remove the market infrastructure it just ignores it.
The second set of reasons flows from the impartial analysis of what needs to be done? (Something must be done, this is something.) What is it that needs fixing? The recognised big issues are:-
- The NHS contributes very little directly to improving health (other than in the obvious sense of fixing illness) or to reducing health inequalities.
- The NHS has major unjustified variations in terms of quality, efficiency and outcomes generally. Variations in quality occur even within the same organisation.
- The professions and NHS managers are poorly adapted to the need for shared decisions making and for public and patient involvement.
- The cost of care rises faster than GDP growth and the tensions this creates are unresolved.
- We have an unstable system with no real strategic direction either nationally or locally. We have no idea around levels of funding even in the short term. We have poor management as many good managers have gone and there are too many organisations to supply good managers to them all.
- There is a growing realisation that organisational changes as such and especially major top down reorganisations of the whole system don’t work. There is also an understanding that stability is important. So how is change brought about?
Anyway that is a long way of saying that before we launch another reorganisation or another 10 year plan or a five year view or even a new party policy position there needs to be some new thinking and some new answers to the most basic questions.
Richard Bourne, September 2015
National sight loss charity calls for better signposting to support for blind and vision impaired veterans
This National Eye Health Week (21-27 September) a national charity is urging eye health professionals to help improve the pathways to vital support for people newly diagnosed with sight loss after 61% of the charity’s beneficiaries said they wished their eye health professional had told them about the life-changing support available.
In a recent survey, Blind Veterans UK’s Veterans and Carers Survey, Blind Veterans UK also found that the majority (84%) of its beneficiaries said they were most likely to consult with the eye clinic at their local hospital about their sight loss, although almost a quarter of respondents struggled with severe sight loss for six years or more before finding out about the support available to them.
In response to the findings, Blind Veterans UK has launched a campaign during National Eye Health Week this week urging eye health professionals to ask patients if they served in the military, and if so, refer them to the charity for support. The charity will be contacting ophthalmologists at eye clinics across the UK this week, raising awareness of the support available. The charity is also advertising its services on pharmacy bags and in eye health publications.
Sarah-Lucie Watson, consultant ophthalmologist and trustee of Blind Veterans UK, said: “The results of the Blind Veterans UK’s Veterans and Carers Survey show just how vital it is for people to be signposted to support organisations, like Blind Veterans UK, at the point of diagnosis.
“Currently, Blind Veterans UK supports 4,000 blind and vision impaired ex-Service men and women, although it is estimated that there are tens of thousands veterans who could be eligible, yet they don’t know about the support available to them. We are urging eye health professionals to make sure their patients know about further support available, so that they do not have to battle blindness alone.”
Blind Veterans UK supports all ex-Service personnel with severe sight loss, including those who did National Service, regardless of when they served or how they lost their sight. It could be due to an incident while on active service or simply the result of an accident, illness, eye disease or ageing.
The charity has a UK-wide network of welfare officers and three centres in Llandudno, Brighton and Sheffield, providing rehabilitation and training. It also provides emotional support, equipment to make life easier and social activities, as well as opportunities to learn new skills, such as IT, and to try new hobbies from fishing to photography.
John Cantwell, 67 and from Banbury, has been receiving support from Blind Veterans UK since 2010 after a worker at his hospital eye clinic referred him to the charity. He said: “I’m very, very glad I got in touch with Blind Veterans UK, the back-up and support is just marvellous. I’d encourage any veteran with sight loss to call them, it really is as good as it seems.”
If you are, of know of, a blind or vision impaired ex-Service man or woman, request free, lifelong support by calling 0800 389 7979 or visit www.noonealone.org.uk.
MORE than half of people invited to take a new bowel cancer screening test didn’t take up the opportunity – even though it could stop them developing or dying from the disease, according to a Cancer Research UK report published in the Journal of Medical Screening today (Monday).*
Cancer Research UK scientists found that people from poorer neighbourhoods were less likely to take up screening, with only one third in the most deprived neighbourhood going for their appointment compared to over half in the most affluent.**
Researchers looked at how many of the 21,000 people in six pilot areas*** of England, who were sent an appointment, did not go ahead with the new test.
In the most ethnically diverse area, 39 per cent decided to have the test compared to 45 per cent of people in the least ethnically diverse area. And more men (45 per cent) took the potentially life-saving test than women (42 per cent).****
The NHS Bowel Scope Screening Programme offers a one-off test to 55-year-olds that involves a specially trained nurse or doctor using a flexible tube, with a tiny camera on the end, to look inside the large bowel. The test helps prevent bowel cancer by finding and removing pre-cancerous polyps. It can also detect cancer that has already started to develop, before symptoms are noticed and when it’s easier to treat.
Analysis leader Dr Christian von Wagner, senior lecturer in Behavioural Research in Early Diagnosis of Cancer at the Health Behaviour Research Centre at UCL, said: “These are early days for the new bowel scope programme – there hasn’t been a publicity campaign about it yet, and bowel screening is generally not as familiar to people as breast-screening mammograms or cervical-screening smear tests. With that in mind, we were encouraged by the level of uptake in the pilot areas for a fairly new and invasive test, and we were surprised that more men were willing to have the test than women. What we found worrying was that people living in poorer areas seem less likely to take advantage of this screening.
“There are lots of reasons why people, wherever they live, might not have the test – and these can include practical barriers such as embarrassment about the procedure or problems taking time off work to keep the appointment. We’re doing more research to uncover these reasons and see what can be done to encourage as many eligible people as possible to take part.”
Bowel cancer is the second most common cause of cancer death in the UK, with around 16,200 people dying each year, and 95 per cent of cases developing in people aged 50 and over. Studies have indicated that bowel scope screening could reduce bowel cancer cases by up to 33 per cent and deaths by up to 43 per cent among those who took the test.
The screening programme is being phased in across England and is due to be fully rolled out by 2018. It will run alongside and enhance the current bowel cancer screening programme which sends a DIY faecal occult blood testing kit (FOBt) every two years to people aged 60 to 74 in England. This test looks for hidden blood in stool samples, a possible sign of cancer.
Dr Julie Sharp, head of health and patient information at Cancer Research UK, said: “The Bowel Scope Screening Programme has great potential to both prevent bowel cancer and detect it early – and research funded by Cancer Research UK will help to ensure the programme is introduced successfully. You don’t need to have symptoms for this test to be effective, but people can choose whether or not to have it and it’s important that they receive clear information so they can decide what’s right for them.
“Research like this can identify practical barriers that stop people taking up the test when they would like to have it. We welcome the new ambition from the Independent Cancer Taskforce that uptake for bowel scope should reach 75 per cent in all parts of the country by 2020, as this gives a clear signal that the NHS should be removing these barriers.”
* Uptake of Bowel Scope (Flexible Sigmoidoscopy) Screening in the English National Programme: an analysis of the first fourteen months – Lesley M McGregor, Bernardette Bonello, Robert S Kerrison, Claire Nickerson, Gianluca Baio, Lindy Berkman, Colin J Rees, Wendy Atkin, Jane Wardle and Christian von Wagner.
Researchers were based at: Health Behaviour Research Centre, UCL (University College London); NHS Cancer Screening Programmes, Sheffield; Department of Statistical Science, UCL; South Tyneside NHS Foundation Trust; School of Medicine, Health and Pharmacy, University of Durham; Department of Surgery and Cancer, Imperial College London.
Overall, 43.1 per cent of invited people had the screening test
** Uptake in the most deprived location was 32.7 percent, and in the least deprived it was 53.2 per cent.
***The six centres were: South of Tyne – Queen Elizabeth and South Tyneside; West Kent (West Kent and Medway); Norwich; London (St Marks); Wolverhampton; Surrey (Guildford).
This analysis covers 21,187 invitations sent to eligible people in six screening centre areas, as part of the Bowel Scope Screening Programme, during the first 14 months of the programme – March 2013 to May 2014. A pre-invitation explanatory letter was sent to all men and women who had their 55th birthday during this time. This was followed by a screening invitation letter offering a specific screening appointment. People who did not confirm that they would attend the appointment were sent a reminder letter.
****Uptake in the least ethnically diverse area was 44.9 per cent, and in the most diverse it was 38.7 per cent. In total, 44.6 per cent of all invited men were screened, compared to 41.5 per cent of all invited women.
Majority of parents back calls by BMA for all UK academies and free schools to meet same healthy food standards as state schools
As children across the UK settle back into school, a new online survey from the BMA1 reveals that the majority of parents (77 per cent) back calls to ensure food served at academies and free schools meets the same healthy standard as other state schools.
Despite strict food regulations2 for local authority schools in England, more than 3,500 academies and 200 free schools do not have to meet the same standards3, raising concerns that children in these schools are more likely to be served poorer quality food.
In the survey of 2,000 parents of children aged four to 16 across the UK, eight out of 10 (79 per cent) also support calls for a free, daily piece of fruit or vegetable to be provided to UK school children up to the age of 114.
This comes amid accusations of a government U-turn over plans to tackle obesity, and as the government cuts another £200 million from the public health budget which will undermine efforts to protect and improve the nation’s health and wellbeing.
The survey follows the recent publication of the BMA’s ‘Food for Thought’5 report , which also included recommendations to prohibit the marketing of unhealthy food and drink in schools, and called for local authorities to work with schools to promote healthier diets.
Commenting on the findings, Professor Sheila Hollins, BMA board of science chair, said:
“Doctors are increasingly concerned about the impact of poor diet; a significant cause of ill health, leading to around 70,000 deaths annually and costing the NHS £6 billion every year.
“It’s incredibly concerning that a third of UK children leave primary school overweight or obese. Eating a balanced, healthy school meal helps pupils to learn, improves their academic performance, and uses the closed school environment to promote healthy behaviours in young people.
“Worryingly, other research suggests that pupils in academy schools may be consuming significantly higher levels of fat, calories and saturated fatty acids, compared to those at other state schools, highlighting the importance of a whole-school approach to promoting healthy diets, with food standards an important aspect of this.
“We also know that the majority of people in the UK, particularly low income households, are not consuming enough fruit and vegetables, so providing them free to primary school children across the UK is an important way to support healthier diets.” ENDS
The National Audit Office has published the findings from its investigation into the Cancer Drugs Fund. The government set up the Fund in 2010 to improve access to cancer drugs that would not otherwise be routinely available on the NHS.
The Fund is unique in that no other condition has a dedicated fund to provide access to drugs not routinely available on the NHS. It was initially intended to run until March 2014, with a budget of £650 million, while a long-term pricing mechanism was worked out that would allow patients access to the drugs and treatments that their doctors thought would help them. In 2013, the government extended the Fund until March 2016. The Fund now has a total lifetime budget of £1.27 billion.
The key findings of this investigation are as follows:
• The Fund has improved access to cancer drugs not routinely available on the NHS. From October 2010 to March 2015, over 74,000 patients were approved to receive drugs through the Fund. Between 2009 and 2013, use of new cancer drugs (those launched in the previous 5 years) increased in the UK relative to the average in other comparable countries, although it remained below this average.
• 51% of the patients supported by the Fund between April 2013 and March 2015 accessed drugs that were appraised by NICE but not recommended for routine NHS commissioning because they did not meet its clinical and/or cost-effectiveness thresholds. The remaining patients accessed drugs that were in the process of being appraised, or had not been appraised, by NICE.
• More than 40 cancer drugs were available through the Fund at some point during 2013-14 and 2014-15, but the most common 10 drugs accounted for 71% of the patients supported.
• Due to a lack of data, it is not possible to evaluate the impact that the Fund has had on patient outcomes, such as survival. However, a data sharing agreement between NHS England and Public Health England, signed in July 2015, should enable the outcomes of patients supported by the Fund to be tracked.
• The cost of the Fund from October 2010 to March 2015 was £968 million, slightly above the allocated budget. In the early years of the Fund, the budget was underspent. However, taking 2013-14 and 2014-15 together, NHS England overspent the allocated budget by 35% and the cost of the Fund rose by £241 million – an increase of 138%. Over half of the rise was because of an increase in the average cost of treatment per patient and the remainder was due to an increase in the number of patients supported.
• NHS England has taken action to control the rapid growth of the cost of the Fund, including removing drugs on the grounds of cost for the first time. In March 2015, it stopped providing access to some drugs after a review of clinical effectiveness and cost, and in September 2015 it announced that it was proposing to remove more drugs from the national list of available drugs.
• All parties agree that the Fund is not sustainable in its current form. In July 2015, NHS England proposed that the Fund should become a ‘managed access’ fund that pays for promising new drugs for a set period before NICE decides whether the drugs should be routinely available on the NHS. The implication is that the Fund would no longer support the provision of drugs that have been appraised but not recommended by NICE. NHS England plans to consult on its proposals in autumn 2015, with the aim of implementing the new arrangements from April 2016.
total cost of the Fund, October 2010 to March 2015
patients were approved to receive cancer drugs through the Fund, October 2010 to March 2015
overspend on the allocated budget for the Fund for 2014-15
|39||cancer drugs that could treat 67 cancer conditions (indications) were available through the Fund in April 2015|
|19||cancer drug indications were removed from the Fund’s national list in March 2015|
|51%||of patients supported by the Fund have received drugs previously appraised but not recommended by the National Institute for Health and Care Excellence|
|19%||of patients supported by the Fund were approved to access one drug, Avastin, between April 2013 and March 2015|
|£416 million||total cost of the Fund in 2014-15|
I have had the good fortune to have been a hospital inpatient only once – as a five year old when I had my tonsils and adenoids removed. The experience sticks in my memory because in those days – 1946 – no parental visiting was allowed and even for a relatively simple procedure such as tonsillectomy and adenoidectomy inpatient stay was quite long. Since then I have been twice to accident and emergency departments but in both cases for relatively trivial conditions and the experiences were pretty unremarkable.
Since 1994 however I have had occasion to visit colleagues and relatives in hospital and this has allowed me to experience modern inpatient care at one remove as it were. As a doctor myself, to see modern healthcare in action from the receiving end has been particularly interesting.
In my early career I worked in three teaching hospitals where things were very different; but then this was over 50 years ago.
Surprises and causes for concern :
Lack of communication between medical and nursing staff. In my day the regular consultant’s round was the event when patient care was planned as a joint enterprise between the doctors and nurses. This practice seems to have died a death with the consultant’s round now being a rather low key uni-disciplinary affair. During one admission it was reported that the medical staff appeared from time to time, usually early in the day, seemingly rather anxious to avoid the nursing staff – skulking was the term used to describe their demeanor ! So, it was not unusual for the nursing staff to be operating to yesterday’s medical agenda. For example, insisting on restricting fluid intake on a boiling hot June day when this had been reversed two days previously by the medical staff. There were also several incidents of buck-passing where the nurses said the doctors would do something whereas the doctors said the reverse.
Lack of continuity of nursing care. During the most recent admission every day a new team of staff nurse and health care assistant was assigned to the patient. Inevitably with a lengthy admission he saw the same team several times but only intermittently. There is an argument, I know, for having fresh pairs of eyes looking at patients and inevitably the rostering of staff will have an impact, but I think having a daily change of staff is taking this too far and is at the very least confusing to the patient – and relatives – and almost certainly inimical to optimal care.
Staff operating as independent practitioners. With each admission it was noticeable that the staff nurses seemed to operate as independent practitioners doing things their way. Although the ward where one relative was treated recently was managed by a very experienced and confidence – inspiring sister her writ did not seem to run far with the staff nurses. One example of this involved the regular redressing of an infected wound – the cause of admission. Although a tissue viability specialist nurse had specified how it should be dressed and had written this in the notes most staff nurses seemed either not to have read it, or to ignore it, preferring their own judgement and experience to that of a specialist in the field. When this variation in practice was brought to the attention of the sister she responded that she did not believe it to be the case; but in the event she redressed the wound herself paying strict attention to the written advice of the tissue viability nurse. It was expected that things would change after this event but they didn’t.
Misrepresentation of prescribed actions. A practice discovered by accident on studying the case-notes was that sometimes the nurses signed that particular prescribed medications had been given when in fact they had not. This was reported to one of the pharmacists who visited daily to oversee the drug regimen. They were shocked and indicated that this was a serious and potentially dangerous breach of discipline and should be reported to the ward sister. In order to avoid a fuss and causing bad blood no action was taken; but on reflection it should have been reported for the benefit of other patients.
Substandard care at weekends. We all – fellow visitors and patients – came to dread weekends. Nothing happened unless it was a serious emergency. Patient care moved into the slow or stop lane. It almost appeared as if the staff who volunteered to work at weekends did so because they knew they would not have to do much. On occasions we noticed that senior nursing staff were on duty at weekends in order, we assumed, to ensure that standards did not fall too far.
Substandard care at night. On many nights staff who also worked days on the ward took their turn. But on other occasions night staff were agency staff or staff who only worked nights. It has to be said that many did not inspire confidence in their competence. We quickly formed the view that if a patient was receiving potentially dangerous treatment such as intravenous therapy or nasogastric feeding, for example, they were in real danger of things going wrong or not being done during the night shift.
One night there was a serious life-threatening complication and emergency measures had to be taken to prevent a possible fatal outcome. Fortunately, as well as a very clued up young doctor being on call that day there was a very competent staff nurse, part of the regular ward team, who was responsible for the patient’s nursing care. I have no doubt that her presence contributed significantly to his survival and recovery and that with some of the other night staff who appeared from time to time, he might not have been so lucky.
Inappropriate resuscitation question. During this same incident, in the course of the remedial action taken by the attending staff, the patient was asked whether or not he wished to be resuscitated should the need arise. Needless to say, he was rather taken aback by this question in these circumstances – there had never been any previous suggestion either that he was in danger of death or that his quality of life was intolerable.
Non communication with relatives. An extraordinary feature of the above incident was that none of the near relatives including the spouse were informed about what was happening and how serious the situation was. This was consistent with a seemingly prevailing attitude that only the patient had any right to information with relatives – even medically qualified ones – having none. Not that communication with patients was perfect. It would appear that the issues of patient autonomy and confidentiality have been carried to absurd lengths.
The “part of the furniture” or “familiarity breeds contempt” syndrome. In the course of one long hospital stay there was, it was felt, a danger that the patient would become part of the furniture as it were and through familiarity the standard of his nursing care would suffer. To be fair I did not see any evidence of this but it occurred to me that to avoid this it was necessary to engage actively and positively with staff by being friendly and helpful. With most staff it was easy to do this but not all. Another benefit of such behaviour I felt was that this encouraged the staff to give more than the professional minimum to the patient’s obvious benefit. The importance of patients and their relatives trying to promote good interpersonal relations with all staff cannot be overstressed in my view. After all they are human too, not robots.
Fear of retaliation by offended/reported staff. On one admission the patient was transferred to a ward where during one of my visits the staff were so unhelpful – refusing to give the required intravenous injection at the appropriate time because it was not convenient – that I was minded to report their action to a higher authority. I did not do so because I felt that if I did the same staff on another occasion might take some form of retaliative action that would not be in the patient’s interests. This feeling was based on both their negative and flippant attitude to my intervention and reports of how they had behaved to other patients in the ward.
The medical staff. My overriding impression with all the admissions was that the doctors operated in a different world to the other staff particularly the nurses. Many nurses did not know the names of doctors working on the wards, and vice versa, which I thought spoke volumes.
I expected to notice the fact that junior doctors now do shifts unlike in my day when we did continuous care. In fact I did not do so. The junior doctors seemed to be on duty during normal working hours with on call doctors – often different doctors – being available as needed during the evening and night.
The relevant consultants appeared regularly on the wards – usually twice weekly – which more or less mirrored my experience as a houseman in the 1960s. They were evidently available to the junior staff for consultations at other times which was reassuring though I did not discover how available they were at weekends.
The weight of paperwork. The amount of time spent by healthcare staff, particularly the nurses, on paperwork seemed excessive. I estimated that the staff nurses spent 25% of their time on paperwork. Some paperwork is inevitable as a component of auditable healthcare but I find it hard to believe that the current paperwork load cannot be lightened considerably. It almost seemed as if documenting what one did was more important than doing it – this may explain, in part, the case described above where a particular medicament was written up as having been given when in fact it hadn’t.
Lack of coordination of care. A major feature of one admission for an orthopaedic procedure was the lack of coordination of care. The only person who seemed to know who was doing what and when was the patient himself. Perhaps not too unacceptable with reasonably fit and educated patients; but totally unacceptable with ill patients and those – increasingly common these days – with evident cognitive deterioration such as dementia.
Disinterest in patient nutrition. I have read stories about patients becoming malnourished during their hospital stays and not believed them. I do now however. One patient’s nutritional state deteriorated considerably in the course of the first four or five weeks of admission. In the end he seemed to be subsisting on three peach slices and a small tub of ice cream each day. The catering staff noticed this and expressed concern but neither the doctors nor the nurses seemed to care until the fact was pointed out to them. In the end nasogastric tube feeding had to be instituted to ensure an adequate nutrient intake.
Lack of trainee nurses on the ward. Very different to my time where most of the staff on the wards were trainee nurses, there were no trainees on some of the wards, only registered nurses acting as staff nurses and health care assistants. It is difficult to believe that the absence of motivated trainees eager to learn and to challenge current practice and thinking does not lower the overall standard of care.
Staff too busy to provide proper personal care. Waiting for bedpans, commodes etc was normal, sometimes for very long times. This I believe was in part a reflection of the sheer volume of tasks to be undertaken; but it also suggested that attending to a patient’s excretory functions was seen as a low priority. The truth is, of course, that on a patient wellbeing scale, being able to exercise these functions in a timely manner rates rather high.
So, my hospital inpatient experience at one remove over the last 21 years gives no cause for complacency. At the very least it suggests significant underfunding, a lack of discipline among nursing staff, acceptance of poor standards of care at weekends and nights, a clear imbalance between the focus on technical healthcare and a concern for patients’ wellbeing, a lack of clear leadership on the wards, and a willingness seemingly to employ staff of doubtful competence to make up shift numbers.
One has to ask of course whether my experience was representative of the NHS hospital service as a whole. It comprised admissions to only three hospitals – one major teaching hospital, one highly reputable regional specialist centre and one a general hospital in a prosperous part of the country with an educated and empowered catchment population – but all three are likely to provide a higher standard of care than the standard district general hospital. It is reasonable to posit therefore that my experience probably under-represents the scope and scale of problems with modern hospital inpatient care.
Were things better in my day? Almost certainly not in many respects including the “risky weekend” syndrome. But in one respect they were in that nursing was then a disciplined service and that much of nursing care was provided by trainee nurses working as part of the ward nursing team, not as now, as super-numeries if present at all.
Something I had not fully appreciated before my very close involvement with the most recent admission was the importance of nursing to the whole healthcare process. A sensitivity analysis of episodes of healthcare would demonstrate, I am confident, that without good nursing there is no good healthcare. It is a necessary though not necessarily sufficient element of good healthcare. So getting nursing right must be the priority.
Apart from a radical rethink about nursing practice, recruitment and training there are some other obvious courses of action that would improve matters :
Increase the level of funding for hospital inpatient care. My guess is that the level of understaffing of nursing is at the 20% level. It is clear that other cadres of care staff such as physiotherapy, are also understaffed but possibly not to the same exent. The one group where this did not seem to apply was the doctors!
Wards should be staffed at all times including nights and weekends by the same team of nursing staff in rotation. Bringing in strangers such as agency staff is a recipe for accidents.
Each patient should have a single key worker most appropriately a nurse, to ensure that all inputs to care are coordinated and that there was a good channel of communication between all care staff.
The acute hospital service must be put on a 7/7 care basis. It just is not acceptable any more for standards of care to be allowed to plummet at weekends with measurable adverse consequences for patients who happen to be admitted or become ill then. It is a major indictment of the two major healthcare professions – medicine and nursing – that the “risky weekend” syndrome has been allowed to continue for so long.
The obsession with patient autonomy and confidentiality needs to be revisited. It is not satisfactory for patients to be asked to deal alone with important information and decisions such as the resuscitation question that was put to my relative. It is not actually in their interests.
The importance of patient wellbeing and what this means needs to be included in the training and continuing education of all healthcare staff. The current focus is too much on the technical aspects of healthcare. The fact that nurses have taken on more of the technical aspects that in my day were undertaken by doctors has clearly had the effect of diluting their traditional concern for patient wellbeing.
An interesting insight into management’s view on relative’s feedback such as this critique is that following one of the admissions I wrote a critique of the care received and included it in my application for a senior post with the Trust responsible for the hospital in question making the point that, were I appointed, I would make it my business to try to tackle the issues of concern raised in it. I was not surprised not to be called for interview but I was dismayed that those responsible for making the appointment showed no interest in the critique. At the very least I expected to be invited to talk about it but there was total silence. This may have been a unique example of management blindness to informed criticism, but I doubt it.
As a postscript it is only fair to report that in the course of the admissions described I came across some exceptional staff, particularly nurses and health care assistants, whose competence and caring attitude were exemplary. But such individuals can only do so much to counteract the systemic problems outlined above.
The proportion of cancers diagnosed as a result of emergency presentation at hospital has decreased. At the same time, the proportion of cancers diagnosed through urgent GP referral with a suspicion of cancer (known as the two week wait) has increased.
Presented at the second day of the PHE Conference 2015, these results are taken from the updated Routes to Diagnosis data, covering patients diagnosed with cancer from 2006 to 2013, with 2011-2013 being published for the first time. These new preliminary figures show the proportion of patients diagnosed by route and by year in England.
In 2006 almost 25% of cancers, one in four, were diagnosed as an emergency. In 2013 this figure had fallen to 20%, or one in five. This is against a rise overall in the numbers of cases of cancer.
For a common cancer like lung, the proportion diagnosed through the GP two week wait referral route increased from 22% in 2006 to 28% in 2013, while the proportion diagnosed through emergency presentation fell each year, from 39% in 2006 down to 35% in 2013.
Julia Verne, Head of Clinical Epidemiology, Public Health England, said:
“The latest Routes to Diagnosis data shows a positive trend in how cancer is diagnosed in England. The earlier the better if we are to catch up with comparable European countries and I am pleased that our Routes to Diagnosis work has been able to drive this. We should also note the importance of other work like PHE’s Be Clear on Cancer campaigns in helping people spot symptoms early and PHE’s NHS Screening Programmes in helping detect some cancers early.
“The reason this is good news is because patients diagnosed as an emergency presentation have lower chances of survival compared to those diagnosed in other routes.
“These improvements in routes to cancer diagnosis follow several years of work across the sector to improve early diagnosis in England. Our work however, is not complete; while emergency presentation is declining it still remains high for cancers like liver and pancreas.”
Sara Hiom, director of early diagnosis at Cancer Research UK, said:
“It’s really encouraging to see fewer people being diagnosed through emergency routes, because we know survival is poorer and the experience is worse for these patients. When cancer is caught early, we have more options for treatments and a far better chance of beating the disease.
“But we must still do better. It’s unacceptable to see such variation in patient care continuing, and too many people are still being diagnosed as an emergency in hospital. As well as variation by cancer type and between hospitals, there are also significant differences in the treatment of our older patients, such as being much less likely to have surgery than younger ones. The new cancer strategy makes clear recommendations for how we can improve England’s cancer survival and patients’ experience. There should be no reason why we can’t be as good as the best in the world.”
For the first time, a new PHE led study published in The Lancet  ranks the diseases and risk factors that cause death and disability in England compared with other high-income countries, revealing the nation’s potential to have the lowest total disease burden (years of life lost to death and lived with disability) in the world.
Between 1990 and 2013, life expectancy in England increased by 5.4 years – one of the biggest increases compared with the other EU15+* countries (from 75.9 years in 1990 to 81.3 years in 2013). This was mainly because of falls in the death rate from cardiovascular disease, stroke, chronic obstructive pulmonary disease and some cancers (with progress partly offset by increased death rates from liver disease).
South East England has the lowest disease burden when compared to high-income countries, and England as a whole performs better than the EU15+ average.
Known potentially preventable risk factors taken together explain 40% of ill health in England. If you examine the impact of specific risks on the overall disease burden, unhealthy diet and tobacco are the two largest contributors** (diet accounts for 10.8% of total disease burden and tobacco 10.7%).
Improvements in life expectancy haven’t been matched by improvements in levels of ill-health. So, as a population we’re living longer but spending more years in ill-health, often with a combination of conditions, some of which would have previously been fatal. For example, with diabetes, the years of life lost to the disease have decreased by 56% but years living with disability have increased by over 75%.
Professor John Newton, Chief Knowledge Officer, Public Health England, said: “The findings show the huge opportunity for preventive public health. If levels of health in the worst performing regions in England matched the best performing ones, England would have one of the lowest burdens of disease of any developed country.
“And even though there have been big falls in premature mortality, the top causes of early deaths in England and in each English region are still heart disease, stroke, lung cancer and chronic obstructive pulmonary disease, which to a greater or lesser extent, are attributable to preventable risk factors.”
Dr Adam Briggs, co-author and Wellcome Trust Research Training Fellow, University of Oxford, said: “Life expectancy is increasing across the country but large inequalities still remain. Life expectancy in 2013 for those living in the most deprived areas was still lower than those in less deprived areas enjoyed in 1990. How deprived you are is the key driver of these differences rather than where you live and therefore deprivation and its causes need to be tackled wherever they occur.”
Professor Kevin Fenton, Director of Health and Wellbeing, Public Health England, said: “People are living longer, but they are living longer with disability, which will require more integrated models of care spanning health and social services. The other important implication for health services is that it is likely that up to 40% of its workload is due to potentially preventable risk factors. This reaffirms the importance of people taking positive steps today, liking eating well and stopping smoking, to improve their health in the long term.”
1.PHE is lead author on the paper: Changes in health in England with analysis by English region and areas of deprivation: findings of the Global Burden of Disease Study 2013 , which has been published by The Lancet today (15 September 2015) and is available here: