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NIHR Highlight My Signals - Patients, 2019

Published December 2019

doi: 10.3310/highlight-004267

Share your views on the research.

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. 

In this collection, we asked seven members of the public to tell us which Signals have interested them most and explain why they feel the findings are worth sharing.

Kamil Sterniczuk

Kamil Sterniczuk is a patient who uses his long experience to help medical research. He has worked in a number of different trades in three different countries. After a health break, he is getting ready to enter the job market again. In his spare time he enjoys learning new skills: be it scuba diving or drifting cars.

Albumin administrations can prolong survival for some people with liver disease

While most people have heard of kidney dialysis, few know about liver dialysis. It is a procedure used mostly in the case of acute liver failure but it has been researched with the view to use it in patients with chronic liver disease. I know about it because I have suffered from an untreatable autoimmune liver disease that ended with a transplant. Ascites is a serious complication of an end-stage liver disease. Given the prevalence and incidence of liver disease in the UK, and the huge demand for liver transplantation, there is an urgent need for effective treatments.

As much as I would like albumin infusions to be a part of the solution, I am afraid that results of the ANSWER study are inconclusive and the success rate is marginal. Another consideration is the added high cost the treatment entails. Albumin infusions may be an effective treatment option one day but only after thorough research and improvements are made.

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New insights into living with inflammatory bowel disease

As a patient with long-standing ulcerative colitis, I have experienced many of its symptoms. Due to extreme fatigue I almost flunked a grade in secondary school. Stress, isolation and the lack of control over my body had a huge impact on who I am today. The broad spectrum of symptoms IBD patients experience means there is no one-for-all treatment. As well as the physical toll the disease takes on patients, there is a mental burden that also comes with it. This study serves to show that inflammatory bowel disease may be a significant yet invisible disability. While doctors are usually very good at managing the disease, they may not address the emotional aspect. An added difficulty is the social misconception about the disease. The conclusions of the study suggest the need for customised and holistic care for IBD patients.

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Aerobic exercise is an effective treatment for depression

“When life knocks you down, do a burpee.” – a slogan my gym has used. “A body in motion stays in motion. A body in bed gets depressed” – so I have heard in Orange is the New Black. My favourite one though is “Mens sana in corpore sano” which translates as “A healthy mind in a healthy body”. There is mounting evidence, as shown in this Signal, that exercise is not only beneficial to physical but also mental health. Exercise is also a remedy for depression. Even though depressed people may not feel like exercising and avoid it, they need to be encouraged to engage in any form of regular physical activity to combat their depression. I am hopeful that future guidelines will make regular physical exercise part and parcel of depression treatment.

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Deb Smith

Deb Smith is from the West Midlands and has lived with mental health issues for a large part of her life. She currently has relative stability but as a consequence of her mental health medication developed type 2 diabetes 10 years ago. Deb also has fibromyalgia and arthritis. Deb has a keen interest in health and social care and associated research and is involved as a patient in these fields. She is an active Christian, member of her local women’s institute and The Oddfellows. She works as a volunteer peer support worker for people with mental health issues and was recently recognised with an award from the local voluntary sector.

More than 50% of hip replacements appear to last for more than 25 years.

I chose this Signal having known and been close to a few people who have had hip replacements and because of my own arthritis, which may lead to having a hip replacement at some point in the future.

As I am only just approaching 50, knowing how long a hip replacement could last is important to me as the longer they last the earlier I might be able to have one, which will help with the pain I am in.

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Closer links between police and health services can improve experiences for people in mental health crisis

I chose this Signal because of my own mental health issues and my passion for care for those with mental health issues to improve. I have known someone whose cousin died because of not receiving the care he needed when in a crisis.

I believe that this partnership between police and the health care services when people are in a mental health crisis is vital.

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John Roberts

John Roberts is married with two grown up sons, one grandson and two cats. His interests include reading history, biographies and novels. He also enjoys painting and drawing. John is a fan of the internet which helps inform his interest in patient involvement in health and research.

Financial incentives do not increase attendance for diabetic eye screening

Diabetes is a complicated condition and affects diabetics in different ways but one of the complications of diabetes is retinopathy. Every year the number of diabetic retinopathy cases increase. This Signal makes me ask - why are rates of diabetes screening so low? What are the causes of this – time, travel costs, appointment time? Should they consider evening sessions for diabetics who are working, or weekend appointments?

This Signal shows that financial incentives are ineffective in increasing attendance to eye-screening clinics and I wonder whether providing more information regarding the effects of diabetic eye disease and how to reduce it would be more cost effective?

Perhaps the importance of screening needs to be highlighted more, rather than financial incentives offered, to ensure fewer cases of diabetic retinopathy and blindness. It needs to be explained how retinopathy would impact on their lives. Maybe there is a need to look at appointment times and other ways to get people to attend screening such as texting and sending emails to let patients know they have an appointment. This would save money too.

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Coordinating care for people with long term conditions and dementia: room for improvement

Dementia is becoming more prevalent in the older generation and 80% of people with dementia are over 75 years old. This Signal highlights that people with dementia are more likely to have other health conditions such as diabetes, stroke and visual impairments. These illnesses make it harder to access health services.

Are services designed to improve access for dementia patients, their families and carers? How do they involve carers or families in promoting these services? Do health professionals offer guidance?

This Signal raises questions such as - how are hospital trusts and care homes going to manage services for a ever-growing number of older people with dementia plus the other conditions associated with growing old? This Signal shows they have used more unpaid carers over the past number of years which leads to poorer standards of communication and information sharing with families of patients with dementia.

How do healthcare professionals involve families and carers? Is there a system in place to make sure they are included? Families must feel included in all aspects such as appointment decisions about their relative’s care.

These are points and questions which some to my mind when reading this Signal and which implemented will improve the lives of a growing number of patients with dementia, which is increasing in numbers every year.

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Marie McDevitt

Marie is a retired specialist in public health and spent almost 30 years working for the NHS. She is interested in research and particularly the implementation of research findings, which she falls often lag behind. Since her retirement, she has become involved in patient and public involvement work and is a member of several groups consulting on a variety of health topics.

Single routine offer of a blood test for prostate cancer did not save lives

I chose this NIHR Signal because it is an important and topical issue affecting men. I have also heard about this research finding from another source. I think that many people may assume that just because there is a blood test for a specific condition that it must therefore improve their chance of a long life, when in the case of prostate-specific-antigen (PSA) this does not seem to be the case.

It is also important not to misuse NHS resources by advocating unhelpful or ineffective tests, as these resources could be deployed elsewhere in the service.

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The most effective antidepressants revealed in a major review

I chose this NIHR Signal because it is an important topic. I think quite a lot of people will have taken antidepressants at some stage in their life or know someone who has. I think drugs that are found to have performed better than others ought to be more commonly prescribed and the ones that perform less well, be much less prescribed or not at all prescribed. Effective drug treatments for depression may mean a shorter course of treatment being needed with some potential cost savings for the NHS.

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Public health interventions may offer society a return on investment of £14 for each £1 spent

I chose this NIHR Signal because I think it is an important finding, particularly for public policy makers and funders. I also chose it because I used to work in public health and I know that public health interventions can be undervalued by many, including the public. Public health can be regarded as a type of ‘Cinderella service’ and since its transfer to the local authorities from the NHS in 2013 it has suffered funding cuts. Prevention really is better than cure.

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Helen Cooke

Helen Cooke is a volunteer Patient Research Ambassador for Leeds and York Partnership Foundation Trust and for the National Institute of Health Research (NIHR). Specialising in mental health, she raises awareness and understanding of patient, public and carer participation and involvement in research. Helen has a background in psychology and has worked in medical conciliation. She is also the Patient and Public Voice for Shared Decision Making and Health Literacy for NHS England.

Outpatient video consultations are feasible but challenging for the NHS

I was drawn to this Signal as I think the mental health aspects for patients are interesting.

A video out-patient consultation means that cancer patients recovering from surgery can avoid travelling and the unpredictable appointment needs of a diabetic patient can be met. A quick convenient follow-up appointment that avoids marinating in a waiting room full of infections is appealing, and for those of us comfortable with technology and what we want to talk about, the deal is done.

However, it is important that patient choice and shared decision making between clinician and patient is central and low users of technology are not forgotten.

The study mentions the elderly, sick and poor but mental health must be included.

The potential for some patients and issues is huge, but there is one caveat - you cannot reach out and touch someone’s hand through a computer screen.

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Better evaluation of physical health services for people with severe mental illness is needed

This Signal resonated with me as I hear about this issue from staff and service users.

The research describes possible solutions for integrating physical health care for service users with severe mental health issues. Currently, the two services remain separate despite compelling evidence that people with severe mental illness have lower life expectancy and poorer physical health.

Tentative suggestions are made around care coordinators overseeing care integration, staff training and clarification of roles to ensure better and clearer communication across the mental and physical health care divide.

But the final two sentences of the Signal illustrate the problem and the solution. Asking for ideas from mental health service users, who are directly affected, resulted in useful suggestions around improving appointment booking, bringing physical health information into the mental health environment and acknowledging their sexual health needs. Rather than being an afterthought, perhaps service user involvement should be the first thought.

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Wider stakeholder involvement could overcome resistance to modernising healthcare services

My interest in this Signal was sparked by discovering that ‘wider stakeholder involvement’ included patient and community groups, as I work with and am part of some of these groups.

Decommissioning is a challenging process involving the reduction, replacement and removal of services, often driven by the need for cost-effectiveness as well as improving patient experience.

It comes as no surprise to learn that patients and community groups feel a sense of loss when services are decommissioned or that they express cynicism when financial factors behind the decision are played down.

It’s also no surprise that in the absence of finding a decommissioning formula, one consistently helpful factor was good communication and engagement with all stakeholders. It’s also no surprise that this transparency might lead to them wanting to be part of the solution and co-produce the healthcare system that belongs to us all.

It seems that honesty is indeed the best policy.

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Margaret Ogden

Margaret Ogden has been involved in Patient and Public Involvement (PPI) for over 12 years, starting in the cancer networks and then working in the dementia field. Her other interests include palliative care, diabetes, audit, diagnostics, equality and diversity, community pharmacy and social care. Margaret is an Expert by Experience for the CQC and attended the International Research Summer School in 2011 at Lancaster University. Recently she won an award with South London CRN for Outstanding Contribution to Clinical Research – Putting Patients and Carers First. She is also a World Health Organisation (WHO) Patients for Patients Safety Champion. When not doing PPI she likes museums, art galleries, ballet and the cinema.

CBT may help ease depression in the workplace

I chose this Signal because of the stigma which can surround depression in the workplace. This can be as overwhelming as the illness itself. I personally experienced stigma in the workplace and at times was unsure whether I was subject of bullying. Anything which can be done to help people in the workplace is to be welcomed and may decrease absenteeism.

Cognitive Behavioural Therapy (CBT) and similar exercises may be beneficial to many employees who are struggling. I also think training programmes for others may be valuable in raising awareness.

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Robert Brickwood

Robert Brickwood is committed to helping shape patient services through his 14 years experience working in Forensic Psychiatric services, both community and institutional. He also volunteers as a befriender in a Psychiatric Intensive Care Unit. Robert has Asperger’s and ADHD and understands the mental health issues that many people endure when they have multiple medical conditions and patient care is inconsistent. He is a father of three children who also have Autism. Despite leaving school with few qualifications, Robert achieved a degree in 2012 in Health and Social Care and through his personal and professional experiences he hopes to make a meaningful contribution.

Mixed evidence shows some impact of mass media campaigns promoting tobacco control, physical activity and sexual health

As a person with Asperger’s and ADHD, I am in tune with how people are influenced by mass media, how public awareness campaigns can subtly slide into the subconscious and how they can (properly managed) effect a positive motivation for people. Also, with three teenage children immersed in social media, we see confusion in the marketing of campaigns for better health habits and lifestyles which look similar to product and service advertisements, so a cautionary approach helps to separate and prioritise. Perhaps a more targeted and localised approach to promoting health could be more cost-effective, using localised and informed services that gain the trust of the population.

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Surgery for a deviated nasal septum improves quality of life more than non-surgical approaches

I absolutely loved this signal as I have a deviated septum myself and have suffered many disadvantages over my lifetime, the most detrimental being lifelong snoring and insomnia, hay fever and even a car crash due to my blocked sinuses.

Only diagnosed one year ago following research by myself and failed treatments of steroids and nasal sprays, a lifetime of hay fever medication seems to be the normal pharmaceutical route to take. I am surprised that the abstract states there is no national NICE guidelines on septoplasty, so I believe a more informed and aware patient can confidently request an Ear, Nose and Throat (ENT) referral for surgical consideration.

This abstract could potentially empower people to be more accurately informed as to their choices.

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