Carol Bewick, Head of Membership Engagement and Communications, AMRC

A chorus of powerful voices: How charities work to improve the NHS for patients


Carol Bewick, Head of Membership Engagement and Communications, AMRC

Date: 08 June 2018

Over the 70 years of the NHS, there has been constant change in our health service. We all recognise the changes in structure, care and delivery - but how often do we think about how different our ‘chances’ of surviving many illnesses are? How many treatments do we take for granted? Research and innovation have run hand in hand with the NHS since 1948.

Over the past seven decades, people, often those affected by disease, have sometimes been frustrated by a lack of treatments, struggling to get a diagnosis or even enough understanding of their disease for there to be a treatment – not to mention the symptoms they are forced to live with.

Working behind the scenes, charities are taking the risks and funding medical research that those of us affected by illnesses need and want.

With the development of the NIHR, we saw patients coming centre stage in publicly funded research. The world – or research for patient benefit - started a seismic shift.

Without research the health of patients and the public would never change. Never get better. No new treatments. No understanding of what ails us.

Driving research in the NHS

Today in the UK 29% of non-commercial research in the NHS is funded by charities that are members of the Association of Medical Research Charities (AMRC). That’s big! Each charity has an incredible story told by powerful voices but we at the AMRC bring them together.

Founded in 1987 and with around 140 member charities today, our member charities are funding gold standard quality of research, spending £1.6bn on non-commercial research funding in the UK. That’s more than any public body so it is vital we all work together to make the most out of the NHS possibilities and ways we can work.

The likelihood is that the science or patient voice in the design of a treatment you have access to was funded by or coordinated by charity, or it was helped through the complexities of regulation by charity colleagues and their passionate supporters.

In 1953, for example, Sir Norman Ashton discovered that excessive oxygen given to compensate for breathing problems associated with preterm birth can cause blindness. Research led to the careful control of oxygen delivery to premature infants. Follow-on work supported by Fight for Sight, the eye research charity, helped to develop techniques to salvage the vision in premature babies. This is common practise on NHS neonatal wards today.

Working with the NHS

AMRC member charities don’t just support the creation of new treatments you can receive through the NHS or which can be trialled there. They work with the NHS in many ways.

Anthony Nolan for example, works tirelessly to save the lives of people affected by blood cancer. But they found that NHS England was considering only allowing one transplantation of stem cells to a person with blood cancer who was suitable for transplantation. If a patient then relapsed they could not be treated a second time. The charity team and patient advocates worked closely with the NHS in 2016 to make sure that people would still have a chance of a second transplant.

Target Ovarian Cancer,, created learning modules to help GPs detect ovarian cancer, a less common and often late diagnosed condition. Now over 45% of NHS GPs can spot the early signs of ovarian cancer, improving the chance of survival and length of life for women.

The Cystic Fibrosis (CF) Trust along, with the NHS, ensure that CF care teams enter data at every specialist centre and clinic across the UK, with over 99% of people with CF consenting to their data being submitted. This has created a valuable registry housed by the charity. Non-identifiable registry data is used to improve the health of people with cystic fibrosis through research, to guide quality improvement at care centres, and to monitor the safety of new drugs.

Future innovation and partnership

Research by the NIHR in 2016 showed that patient outcomes even improved if a hospital is research active! Medical research charities will continue to innovate, partner and work with the NHS for the sake of people affected by life changing or life limiting disease, to fight for treatments where we think it’s important, and to do what we can to support the NHS to undertake research.

There is much being done in health research charities across the UK. We will continue to work with the NHS, question them when we feel they need it, give advice and fight for patient voice. The size and scale of the NHS will always be vital for research into rare diseases and new treatments, where multi-centre studies are the only way to access the numbers of patients needed for robust research.

Happy birthday to a partner in research and a deliverer of care.

The NIHR has launched its I Am Research campaign, giving patients, the public and health and social care research professionals a chance to shout about how fantastic research is and raise awareness of the benefits of research and its positive impact people's lives. More information on this year's campaign, which celebrates the NHS's 70th birthday, is available on the I Am Research website.

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.
  • Summary:
    In our latest blog, Carol Bewick, from the AMRC, highlights the huge role charities have played during the last 70 years in funding and supporting research to improve the NHS. Her blog is part of our I Am Research campaign, which also celebrates the NHS's 70th birthday.
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    Carol Bewick, Head of Membership Engagement and Communications, AMRC

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