In My Signals, health and social care staff and service users tell us what research is important to them and why they feel others need to know about it. Join the conversation on Twitter and tell us which Signals have interested, excited or surprised you, using #MySignals. You can find the latest NIHR Signals here.
We asked four members of the public who have experience of health research to tell us which NIHR Signals have most interested them, or even prompted them to rethink their care, and explain why they feel the findings are worth sharing.
Amander Wellings has cared for a number of family members with a range of conditions and as a result has had extensive experience of health and social care. She is a member of a volunteer panel of service users that supports research projects and has been directly involved in the design and delivery of several research studies. She is passionate about patient and public involvement and is a member of an INVOLVE advisory group set up to enable the active involvement of patients in research teams.
“Healthcare needs to be based on evidence and we gain that evidence from research. Without research, there would be no innovation in NHS and social care. Innovation based on research evidence leads to best practice and good use of limited resources.”
“My husband has been on warfarin for some time and when I read this Signal I immediately wondered if he could be considered for the self-monitoring. When his blood clotting levels change, he feels very unwell. It seemed that with self-monitoring, clotting level change could be measured more quickly and the warfarin dose adjusted without waiting to see a practice nurse.
"I gave him the Signal to read and since he was feeling rough from wonky clotting levels, he was keen to discuss the possibility of self-monitoring with our GP at his next appointment. Unfortunately, the self-monitoring programme has not yet been rolled out in our area so he was rather disappointed. However he did have a better, more focused, consultation with the GP about the problems of the changing clotting levels; the doctor advised him to always have a blood test to check the levels three days after any course of antibiotics and they looked together at previous patterns of blood test results.”
Annual health checks for people with intellectual disabilities reduce preventable emergency admissions
“This Signal caught my eye because my brother has a learning disability and had been having his annual health check. Reading the Signal prompted me to look a bit more closely at the health check system, what it should cover and how it is managed. It appeared that my brother hadn’t had any glucose monitoring to rule out diabetes. I flagged this up with his carers who arranged for this to be checked and indeed, he was found to be on the borderline of diabetes. The Signal also raises interesting questions about how people with learning disabilities are supported to attend for health checks, how they can be helped to understand health issues and how they can be supported to change health behaviours – eating and physical activity, for example.”
Mary Nettle has used mental health services for almost 40 years and works as a mental health user consultant. She has been a Mental Health Act Commissioner, a role now absorbed into the Care Quality Commission. Mary has also been closely involved in the prioritisation and conduct of research through a number of NIHR programmes.
“I am keen to see patients’ points of view taken into account in research. Research which does not ask the patient what they think is bad research – for example studies that observe only symptom control but do not ask patients about side effects. Care and treatment can be improved by asking what works best for the patient, their family/friends and wider society.”
Links between antipsychotics in pregnancy and harmful outcomes for baby may be influenced by mother’s lifestyle
“Antipsychotics are powerful drugs that play an important role in treating serious mental health problems. This Signal caught my eye as one that I thought could be really useful to people who need to take these drugs and who need to be aware of their long-term impacts.
"The Signal noted that poor previous health and lifestyle factors had an impact on later health outcomes in women who continue to take antipsychotic drugs during their pregnancy. When I first read that, I thought this point sounded slightly judgemental, which might put a reader off – but the very useful expert commentary stresses that these lifestyle factors need to be seen as modifiable, so the risk of a poor outcome is reduced. I was also glad to see that the study reinforces the NICE guidance that valproate should be avoided during pregnancy. It would be good for women using mental health services and contemplating pregnancy to understand the importance of this guidance.”
“Clozapine is a drug that creates considerable problems for people who have to take it because it has such a hefty impact on their metabolism. So I was pleased to see a Signal that looked at a number of trials of the diabetes drug metformin (or a placebo) to see if metformin could help such people lose weight. I think this Signal could be very useful to a patient taking clozapine who might want to discuss their weight-gain with their GP or consultant and consider whether metformin might be right for them. In fact reading this Signal made me want to go and find out more about medication that I take and its possible impacts.”
Patsy Staddon is a survivor of alcohol dependence and has been a user of mental and neurological health services. She is an active researcher with a special interest in alternative approaches to the alcohol use of disadvantaged groups, particularly lesbian women. Patsy is particularly interested in the potential for research led by users of health.
"Academic and service user/patient-led research is the most exciting experience imaginable. Suddenly 'ordinary' knowledge gains a third perspective and in coming to life, leaps forward. I would like to see more of this kind of research; working together like this could change knowledge entirely."
Motivational interviewing may encourage healthy eating in people with type 2 diabetes and Counselling services help expectant mothers quit smoking
“I have a special interest in motivational interviewing for people with alcohol and mental health issues. In my experience I have seen that motivational interviewing can be very helpful, a brilliant technique and a powerful way to enable some people to look at their issues differently. So of course I was curious to see if there were any Signals with evidence about the technique. Neither of these two Signals had examined the issues that I know most about, but I enjoyed reading them both and getting a better understanding of how motivational interviewing can be used for different groups of patients.
"In the case of the study examining support for pregnant women, motivational interviewing was only one of several techniques that the researchers looked at, but it was good to see that it had been considered as one of a range of approaches to help women. I felt encouraged by the fact that the ‘expectant mothers’ Signal concluded by stressing the significance of personal support to patients in addition to education or information for patients and that the ‘diabetes’ Signal stressed the importance of adequate training to practitioners to ensure an effective service to patients."
Tina Coldham was a mental health service user for 17 years and describes herself as "still a practising depressive!" Her interest in public research developed early as a survivor researcher, to help build evidence of what she and others knew mattered in mental health. Tina currently chairs the co-production network of the Social Care Institute for Excellence. The organisation improves the quality of care and support services for adults and children by identifying and sharing knowledge about what works and what’s new.
“It is critically important that people, especially those with long term conditions, understand the current thinking around their condition. Sometimes, poorly-reported research in the press, TV and radio does a disservice to that research and it can confuse ordinary folk. To empower people, good quality research needs to be explained clearly so that they can make informed choices. And if patients inform the research at the beginning, so much the better.”
“As someone who has lived with asthma for a long time, I’m well aware how important it is to manage the condition well and how risky it can be. After all, even people with mild or moderate asthma can die from asthma attacks if their asthma is not well managed. So I was interested to see what this new evidence was saying. The Signal about the use of Vitamin D supplements seemed to make a bold statement that these supplements could play a part in reducing asthma attacks. The reductions are only small but the Signal tells us that the change is statistically significant. I was a bit surprised that the researchers don’t know exactly how the Vitamin D works or the best dose to take. And I really struggled to understand the rather technical results section! But I could see myself discussing this with my GP or asthma nurse and giving vitamin D a go."
"At first glance the Signal about self-management appears to say the obvious: people who self-manage well have more controlled asthma and a better quality of life. I understood ‘self-management’ to mean people taking their medication correctly, but in fact the overview that the Signal was based on had pulled together lots of trials testing various different kinds of supported self-management. I would have liked to know more detail about the different components. It seems that personalised, properly written-up asthma action plans are the thing that makes the key difference. I liked the sound of these. This idea makes sense to me, given my experience of how important regular reviews to keep the asthma under control and it made me want to find out more about self-management.”
What can patients do with Signals?
Show a copy to your GP, consultant or specialist nurse and ask them for advice if you think a change of treatment or approach to your condition should be considered. You can print Signals directly from the ‘Discover’ Portal or show them on your phone or tablet.
Follow the links in the Signal and read about related Signals or other publications from the Dissemination Centre such as Highlights or Themed Reviews - or follow the link in the Signal to read the abstract of the article on which the Signal is based.
If you would like other people to know about the Signal and what it covers, share it via Twitter, Facebook or other social media – or forward it to a charity or community organisation who can reach more people with the same interests as you.
If reading the Signal had made you think that there is still an unanswered research question, you can tell NIHR.
Tell us which NIHR Signals you think people need to know about on Twitter using #MySignals.
You can get NIHR Signals delivered to you by email by joining our mailing list.