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Welcome to the place that transforms research in the NHS

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Welcome to NIHR

Welcome to the place that transforms research in the NHS

We are a unique organisation – the world’s most integrated health research system, spending the equivalent of 1% of the NHS budget on research and networks to improve the health and wealth of the nation through research.

NIHR Project Pathways

Welcome to the place that transforms research in the NHS

The NIHR has made clinical research a key part of the NHS, setting high standards by providing comprehensive infrastructure, training and support where you need it.

The feminist appropriation of pregnancy testing in 1970s Britain

Jesse Olszynko-Gryn, Department of History and Philosophy of Science, University of Cambridge, Cambridge, UK


This article restores pregnancy testing to its significant position in the history of the women’s liberation movement in 1970s Britain. It shows how feminists appropriated the pregnancy test kit, a medical technology which then resembled a small chemistry set, and used it as a political tool for demystifying medicine, empowering women and providing a more accessible, less judgmental alternative to the N.H.S. While the majority of testees were young women hoping for a negative result, many others were older, menopausal women as well as those anxious to conceive. By following the practice of pregnancy testing, I show that, at the grassroots level, local women’s centres were in the vanguard of not only access to contraception and abortion rights, but also awareness about infertility and menopause.

… Many G.P.s also prescribed, on the N.H.S., Schering’s ‘Primodos,’ a ‘hormonal pregnancy test’ in tablet form that was less expensive and faster than ordering a urine test. The drug, which worked by inducing menstruation in non-pregnant women (a ‘negative’ result), was taken off the market in 1978 amidst concerns that it caused a variety of birth defects. Primodos Was a Revolutionary Oral Pregnancy Test: But Was It Safe?

  • … continue reading Jesse Olszynko-Gryn‘s full paper The feminist appropriation of pregnancy testing in 1970s Britain on tandfonline and/or download the PDF.
  • Featured image of the Pregnosticon Planotest credit tandfonline.

Rapid resolution and redress scheme for severe birth injury

Seeks views on the proposed investigations into severe avoidable birth injury and the support and compensation scheme


England is a safe place to give birth, and every year thousands of babies are safely delivered to delighted parents by experienced and dedicated NHS staff. This is the outcome that all families expect and the vast majority of families experience. However, tragedies can sometimes occur, and babies can suffer serious harm during delivery. Thankfully these incidents are rare, but it is clear that there is still more that the UK Department of Health can do to achieve its vision to make NHS maternity services among the safest in the world.   

The rapid resolution and redress scheme (RRR) aims to introduce a system of consistent and independent investigations for all instances where there may be severe avoidable birth injury, along with access to ongoing support and compensation for eligible babies through an administrative scheme.

The main aims are:

  • reducing the number of severe avoidable birth injuries by encouraging a learning culture
  • improving the experience of families and clinicians when harm has occurred
  • making more effective use of NHS resources

This consultation – opened since 2 March 2017 and closing at
11:45pm on 26 May 2017 – seeks views about the proposed scheme, including:

  • how the scheme is administered
  • the eligibility threshold for compensation
  • how learning would best be shared and acted on to reduce future harm

This consultation is accompanied by a consultation-stage impact assessment and 2 independent research reports that were commissioned by the department to inform the early stages of policy development in preparing for the consultation.

2017 Documents

  • A rapid resolution and redress scheme for severe avoidable birth injury: a consultation, PDF, 871KB, 42 pages.
  • A rapid resolution and redress scheme for severe avoidable birth injury: impact assessment, PDF, 3.34MB, 81 pages.
  • DH birth injury compensation policy research
    PDF, 1.61MB, 74 pages.
  • No-Fault Compensation Schemes: review, PDF, 1.68MB, 87 pages.

2016 Changes to how NICE appraises drugs and other health technologies

The National Institute for Health and Care Excellence is an executive non-departmental public body of the Department of Health in the UK

The recent proposals by NICE and NHS England to change arrangements for evaluating and funding drugs and other health technologies not only tidy up the processes, but introduce some important new elements.

The four proposed elements are to:

  1. Introduce a “fast track” NICE technology appraisal process for the most promising new technologies, which fall below an incremental cost-effectiveness ratio of £10,000 per QALY (quality adjusted life year).
  2. Operate a “budget impact threshold” of £20 million, set by NHS England, to signal the need for a dialogue with companies to agree special arrangements to better manage the introduction of new technologies recommended by NICE.
  3. Vary the timescale for the funding requirement when the budget impact threshold is reached or exceeded, risking disruption to the funding of other services.
  4. Automatically fund, from routine commissioning budgets, treatments for very rare conditions (highly specialised technologies) up to £100,000 per QALY (5 times greater than the lower end of NICE’s standard threshold range), and provide the opportunity for treatments above this range to be considered through NHS England’s process for prioritising other highly specialised technologies.

James Raftery: Changes to how NICE appraises drugs and other health technologies, BMJ Blog, 2 Dec, 16.

The first of these is non-contentious and probably should have been introduced long ago. It is estimated to reduce appraisal time by 25%. Some interventions are likely to be cost effective if they are even mildly effective and incur low cost. From 2007 to 2014, around 15% of NICE’s technology appraisals fell at or below £10k per QALY.

Specialised services, of which 146 exist, cover a diverse range of disparate and complex services, from services for long-term conditions, such as renal and mental health problems, to services for uncommon conditions such as rare cancers. Funded by a variety of means and lacking standard data, responsibility for commissioning specialised services was shunted from agency to agency until 2013 when NHS England took on responsibility.

Proposals two and three, which are to do with specialised services, reflect the recent rows over funding drugs for hepatitis C when NICE’s approval of sofosbufir led to delays by NHS England due their total cost impact. Besides a BMJ investigation, this led to a considered review by the House of Commons Public Accounts Committee (PAC).

The PAC showed that between 2013–14 and 2015–16, the budget for specialised services increased from £13 billion to £14.6 billion, or 6.3% a year, well above that for the NHS. By 2020–21, the budget for these services is expected to rise to £18.8 billion, 16% of the total NHS budget.

In 2013–14, NHS England overspent on specialised services by £377 million (2.9%) and in 2014–15, it overspent by £214 million (1.5%). In 2014–15, the Cancer Drugs Fund accounted for £136 million of the overspend.

NHS England told the PAC that about three-quarters of NICE recommended drugs apply to specialised services and that most of the budget increase for 2016–17 was related to NICE approved drugs.

The PAC showed that the arrangements for pricing (Department of Health), appraising (NICE) and funding (NHS England) of specialized services were misaligned. It recommended that the Department of Health and NHS England should, in collaboration with NICE, ensure affordability is considered when making decisions that have an impact on specialised services. Proposals 2 and 3 formalise arrangements between NICE and NHS England for appraising and funding these services.

The fourth proposal marks the most radical change by setting the cost per QALY threshold for highly specialised (as opposed to specialised) technologies at £100k, which is five times greater than the lower end of NICE’s standard threshold range. Although this reflects the higher thresholds that have been allowed for some extreme “orphan drugs,” it lacks any coherent rationale besides political necessity. This leaves NICE with at least three cost per QALY thresholds, one of £20k-30k for standard technologies, one of around £50k for end of life technologies and one of £100k for highly specialised technologies.

The State of Medicine

Keeping the Promise of the NHS

The State of Medicine
DES gets special discussion in chapter about poor quality/non existent evidence gathering.

The National Health Service is ‘the closest thing the UK has to a national religion‘. No wonder: it has worked secular miracles. Before the NHS, sick children could not see a doctor before a sixpence was handed over. People died of whooping cough and tuberculosis, illnesses we now scarcely see. When the NHS was founded, almost 70 years ago, people in the UK lived less than 50 years on average – a lifespan which has almost doubled. No matter how poor we are, our health care is included with British citizenship. But the NHS has also been accused of high death rates, lazy and uncaring staff, dirty hospitals and unbridgeable funding gaps. Every politician claims to know how to save the NHS.

Margaret McCartney argues differently. She believes that the NHS is world class: but politicians have to stop micromanaging based on faith in their own political beliefs and instead base decisions on evidence. Patients and professionals working together to deliver an evidence-based NHS is the only future – if we want our NHS to survive.

DES gets special discussion in chapter about poor quality/non existent evidence gathering.

DES DiEthylStilbestrol Resources

Brexit, UK Healthcare and The NHS

Where does the Brexit vote leave the NHS, the health workforce, science, and research?

Where does the vote for the United Kingdom to exit the European Union leave the NHS, the health workforce, science, and research?
The BMJ asked a range of people for their thoughts.

This post content was originally published by The BMJ :

advancing healthcare worldwide by sharing knowledge and expertise to improve experiences, outcomes and value.

Image via Gareth Iacobucci.

On 23 June 2016 the UK government held a referendum on EU membership. Vote Leave won with 52% of the votes.

In the immediate aftermath of the vote, we set up a live blog to track reactions from health experts and scientists, and in the week that followed asked a range of people for their thoughts.

Journalist Anne Gulland followed this with a deeper assessment of the outlook for UK science and health outside the EU, considering how Brexit will affect NHS finances, the pharmaceutical sector, key public health legislation, and other sectors.

In related news stories, scientists and researchers ask what next after the vote, and BMJ journalists Tom Moberly and Gareth Iacobucci report, respectively, on how Brexit threatens the stability of the medical science workforce and NHS staffing.

Martin McKee has written two blogs: one looking at the impact that this vote might have on health, and a second blog discussing the growing confusion as Britain has been thrown into political turmoil. US doctor Bill Cayley says this sends out a warning signal to the US for their forthcoming presidential elections. Margaret McCartney discusses our messy divorce from the EU.

The Brexit Debate

The articles listed below are a collection of free articles and other resources published in the run up to the referendum from The BMJ about the pros and cons of “Brexit” in relation to medicine, pharma, research, the law, the NHS, and global trade agreements.

The BMJ’s editors believe the UK should stay in Europe. Their article arguing for Remain was published on 14 June. A second article was published at the same time by Conservative MP and former GP Sarah Wollaston. Wollaston, chair of the UK Parliament’s health select committee, explained why she had switched from supporting Brexit to supporting the Remain campaign.

The journal’s regular columnist Margaret McCartney also joins the debate, concluding:

“I wouldn’t wish to leave a union where the NHS and research community benefit from close ties with colleagues across the EU. We should not want to be Little Britain.”

What Brexit could mean for . . . The NHS?

David OwenThe launch of the Vote Leave group’s Save Our NHS campaign in April 2016 warned of the growing control and influence the European Union would have over the NHS if the country voted to remain in the EU. Pro-EU campaigners accused the group of “scaremongering” and said that the NHS would be protected from trade deals.

In a letter to The Times newspaper published on 14 June, 60 former presidents and chairs of medical royal colleges and the BMA set out why the UK should remain in the EU.

This article examines what the leave campaign said about the NHS, and how the experts answered. Stephen Dorrell, a former Conservative health secretary, and now chair of the NHS Confederation, told the Confederation’s annual conference on 15 June:

“We need a strong economy to guarantee the growth in funding that the health and care service requires and evidence suggests leaving the EU would undermine this.”

Not all prominent doctors share their views. David Owen, the former Labour foreign secretary who was health minister at the time of the last European referendum in 1975, said:

“We in the cross-party Vote Leave campaign, however, share a common democratic commitment. We will restore legal powers and democratic control of the NHS to voters in the UK. If we vote to leave, we will be able to protect our NHS from EU interference.”

But would a post-Brexit NHS look any different? Anne Gulland investigates.

Public health

EU legislation covers everything from food labelling to disease control, so how might a Brexit affect policies and activities that promote the UK’s health? Anne Gulland assesses the effects of leaving in key public health battlegrounds, including marketing and pricing of alcohol and tobacco, food standards and legislation, and environmental health. Retired civil servant Bernard Merkel offers a personal perspective, based on his experience of working with the European Commission on its public health programmes.


Big UK based drug companies have said they want the country to remain in the EU. Would a Brexit affect access to medicines? Anne Gulland investigates.


John Appleby

Economist John Appleby’s analysis concludes that after 43 years of membership of the EU, unwinding agreements, obligations, and laws, and then renegotiating trade, security, legal, and other relationships with the EU is unlikely to be a snappy or straightforward process. He adds:

“The problem for referendum voters keen on evidence is that there is no comprehensive and reliable cost-benefit analysis that weighs up the facts, the positives and negatives, over the short, medium, and long term and across different groups in society of exiting or remaining in the EU.”


Martin McKee Martin McKee, professor of European public health at the London School of Hygiene and Tropical Medicine, asks if the survival of the NHS is threatened by continued British membership of the European Union, with a particular focus on the Transatlantic Trade and Investment Partnership (TTIP), which if agreed would ease trade between the EU and the United States.

Employment law

Chris CoxWhat would a Brexit mean for employment law in the UK? Christopher Cox, director of membership relations at the UK Royal College of Nursing, says the EU has been the source of many employment rights, including working time, work-life balance, key areas of equality including equal pay for work of equal value, and the treatment of part time, fixed-term contract, and temporary agency workers. He concludes:

“If there was a vote in favour of leaving, many complex issues would have to be resolved. It would take at least two years, if not longer, to serve notice of withdrawal and agree terms with the remaining Member States.”

Looking specifically at doctors, Anne Gulland assesses how leaving the EU would affect working conditions, and in a separate article, asks if Brexit would stop the flow of doctors and patients between EU countries.

Science and research

Paul NurseIn April 2016 a report by the House of Lords Science and Technology Committee warned that leaving the European Union would cost UK scientists money and influence. Research funding is one of the few areas where the United Kingdom gains more money than it spends, said Nigel Hawkes in his news article, adding:

“Of the country’s gross contribution to the EU, £5.4bn (€6.84bn; $7.77bn) can be attributed to the community’s research, development, and innovation activities. But the UK gets back £8.8bn in research grants, so exiting the EU would in theory leave a gap of £3.4bn to be filled.”

Paul Nurse, director of the Francis Crick Institute and former president of the Royal Society, had earlier said that anyone in the UK science and research disciplines who supported the so called “Brexit” was displaying “naivety” and “intellectual laziness.” A letter published in The Sunday Times, signed by more than 100 university leaders, claimed an exit would harm UK research and damage universities’ education alliances.

External links

Children with Autism Spectrum Disorder: Survey of Parents in the UK

Report highlights problems faced by parents of children with Autism

2014 Survey Conclusion

Parents of children with Autism Spectrum Disorder (ASD) face severe challenges in accessing adequate services, according to a survey of hundreds of parents in the United Kingdom.

This report has highlighted the scale of the challenges faced by parents and children with ASD both in relation to the behaviours and health problems encountered but also in relation to accessing adequate services for support. The survey data indicated that a minority of respondents were struggling to access services from the NHS for basic support with challenges such as diet, nutrition, gut problems and sleep difficulties. In addition, even those who had managed to access the professional services available did not have their problems resolved.

Only 11% of respondents felt that the NHS professionals they encountered understood their concerns about the behaviour and healthcare issues of their child, and the majority (70%) felt that their child’s symptoms were attributed to ASD, rather than being worthy of investigation with the potential for treatment. Indeed, having a label of autism seemed to get in the way of accessing services and potential treatments that would ordinarily be available on the NHS. This diagnostic overshadowing meant that children’s symptoms were often left untreated and when parents sought help privately, they were often able to get at least some of these problems resolved. Many of the comments exposed what might best be called a ‘perception gap’ between parents’ experiences of looking after their children– and trying to deal with the wide range of health and behavioural problems they face – and the official health system that still classifies autism as a developmental disability. The official diagnosis is based upon the observation of cognitive, social and other behavioural and communication problems (the so-called ‘triad of impairments’) rather than any recognition of the wide range of co-morbid conditions that are commonly associated with the condition, many of which can be treated. As a result, parents struggled to access treatment, and what was provided was often inadequate.

Report highlights problems faced by parents of children with Autism, Queen Mary University of London, News story, 15 March 2016.

Given this, it is hardly surprising that almost all respondents (80%) had sought help privately. Parents had paid to see a range of health professionals that included doctors, nutritionists, speech and language and occupational therapists. In addition, however, and often in consultation with privately-accessed professionals, parents were experimenting with diet, nutritional supplementation and safe alternative therapies to see if they could help relieve some of the challenging problems faced by their children. In the vast majority of cases, these experiences had been positive, and for a sizeable number, the changes were reported to be life-changing.

The collective experiences of these parents are a reservoir of valuable testimony about the impact of relatively easy, low-cost, interventions that can improve the lives of children with ASD and their families, sometimes dramatically. Much more could be done to document these experiences and develop a more helpful dialogue between parents and clinical practitioners. It would also be possible to foster wider debate and education about these possibilities amongst NHS staff and thereby help many more families to improve the well-being of their children.

Health and service provision for people with Autism Spectrum Disorder: A survey of parents in the United Kingdom, 2014, Queen Mary University of London, ISBN: 978-1-910195-17-8, March 2016.

In this regard, many respondents argued that they would like to see improved relationships with NHS staff, along with a new approach to training and service provision. There were also calls for specialist teams to be set up, including a range of professionals, who could then fully investigate the range of challenges faced by children with ASD and identify possible areas for treatment and support. This has the potential to be life-changing for children with ASD and their families, and in the long-run, it could also save the wider community from at least some of the financial and emotional costs associated with the condition. New forms of best practice that incorporate routine medical checks for treatable comorbid conditions are now being developed for people with ASD in other parts of the world, and there is scope for extending this learning to the UK. As Perrin (2016, 1; see also McElhanon et al 2014) and his co-authors from the Autism Intervention Network on Physical Health and the Autism Speaks Autism Treatment Network (AIR-P/ATN) explain:

“Whereas, until recently, medical complaints (eg, abdominal pain, poor sleep, or disruptive behaviors) were typically considered part of the disorder and therefore not requiring specific attention, today clinicians throughout the country directly assess and treat these associated conditions. The combined AIR-P/ATN network has developed systematic ways to assess and treat coexisting conditions, focusing on those for which management was previously highly variable or sporadic and has shared those methods broadly with the larger parent and professional communities. The active involvement of families and young people with ASD has helped the network identify key issues for individuals and families and focus its attention accordingly. Although clinicians may have limited new, evidence-based options for treating autism directly, they now have systematic ways to evaluate and manage coexisting conditions. In turn, families have learned about new ways to help their children and improve their functioning and outcomes.”

This approach would greatly improve the lives of the families who took part in the survey reported here, as well as many thousands of others across the UK. In addition, the survey highlights the need for more scientific research into the causes and possible treatments of ASD and the range of co-morbid conditions associated with the condition. Parental experiences highlight the way in which diet and nutritional supplements can make a significant difference to the lives of children with ASD, and this is a vital area for further research.

In summary, this research report has highlighted the scale of the challenges faced by children with ASD and their families, the inadequacy of the current services provided by the NHS, the experiences of parents who are using changes in diet, nutritional supplements and a range of therapies to support their children, and the need for new thinking by those who are training health professionals and designing services for the twenty-first century.