Summary of the impact

Around half of older people, aged 65 and over, experience persistent pain; it can be isolating and seriously affect quality of life. This research, much of it done by service users, has produced tools and information for older people themselves, and for the professionals who work with them, to correctly assess and treat chronic pain. It is setting national standards, being adopted by the key national charities and NHS pain clinics, and garnering international interest. Specifically the work has:

• had a direct impact on older adults by helping them to develop and implement strategies to manage their own pain, using self-help materials;
• indirectly helped assessment and management of pain in older people by improving the knowledge and skills of health care professionals through education, new national guidelines and the use of new technologies.

Underpinning research

The overarching goal of this research is to improve care for older adults experiencing pain, both in the NHS and the community. These three studies have been conducted by members of the Centre for Applied Health Research at the University of Greenwich from 2012 to date, primarily Professor of Nursing Pat Schofield, and Dr Rachael Docking, Research Fellow, but also PhD students and NHS interns.

A. The EOPIC study: Engaging with older people in the design and delivery of chronic pain self-management

The aim of this research was to achieve a deep understanding of the consequences of ageing with chronic pain and, through this, develop ways to give older people the knowledge, skills and confidence to live independently at home with self-managed pain. Professor Schofield, the lead researcher/instigator, won a prestigious MRC grant before she came to the University of Greenwich in 2012, to address the lack of adequate support to ensure good pain management.⁵ Phase 4, to design self-management strategies with older adults, was conducted at Greenwich in collaboration with the University of Teeside. Service users have been involved throughout the study, including searching and grading the `grey' literature. They have gone on to develop self-help tools based on their own recommendations, including that the tools should be accessible in printed leaflet format rather than online. They also recommended better information about drugs, and the role of exercise and relaxation in pain management. Phase 5, which is currently in the recruitment phase, will involve focus groups with service users and health care practitioners to evaluate the new materials.

B. Guidelines and app for the assessment of pain in older adults
Schofield was one of the key researchers and authors of the national guidelines: `The Assessment of Pain in Older People', in 2007. The British Pain Society and British Geriatric Society jointly funded the University of Greenwich in 2012 to develop these pain assessment guidelines into an iPhone/Android pain assessment `app' (£15K). Schofield collaborated with the university's Computing and Mathematical Sciences Department to develop the tool for health professionals.

C. An evaluation of on-line training for staff in assessing and managing pain in people living with dementia in south London
A recent study was designed to evaluate the impact of an e-learning, pain education package provided to staff, students and carers working in an acute NHS Trust, who come into contact with patients with dementia. It was funded by the South London Health Innovation and Education Cluster (HIEC) (£25K), with Schofield and Paul Newton, Research Fellow, as PI/project leads. This pilot research project measured changes in the knowledge, skills and attitudes of staff who provide assessment and intervention for people living with dementia and pain. Preliminary results suggest that there is a lack of knowledge, with staff often assuming that people with dementia do not feel pain in the same way as those without dementia. Feedback from participants shows improved levels of knowledge, recognition of the need to improve skills, and enthusiasm for further training in the management of pain. The analysis of the on-going evaluation will assess changes in knowledge, skills and attitudes pre and post training. A further study will investigate barriers to nurses accessing training in pain management.

References to the research

Outputs

Grants

3a Medical Research Council, Lifelong Health and Wellbeing programme: `EOPIC - Engaging with Older People In developing and designing interventions for the management of Chronic pain.' (Grant Ref. G0900684/1 & G0900684/2). £1.2m. Schofield, Smith, Clarke, Martin, Jones, McNamee, 2010- 2014.

Details of the impact

Persistent pain blights the lives of around 50 per cent of people aged 65 and over. Whether pain in the knee or hip, a sore back or arthritis, chronic pain can be isolating and seriously affect quality of life. Professor Schofield's work on developing a universal pain scoring and management system is recognised in the UK health profession as the `gold standard', a view endorsed by key figures under the last heading in this section: `How professionals are using the work'.

Four impacts rooted in the research done by Schofield and the Centre for Applied Health Research are described below:

A. EOPIC study

The EOPIC study aims to deliver more effective ways for older people to self-manage chronic pain, a problem that will affect greater numbers as the population ages. The research team included two active service user groups who were trained to carry out research activities themselves including a systematic review of the grey literature, enabling them to develop self-help tools. These service user groups are fully able to assist in the development of future research proposals. The three tools they developed are:

• a `How to find literature' leaflet - adopted by the British Pain Society and British Geriatric Society;
• a `How to self-manage your own pain' booklet - adopted by NHS pain clinics (n = 300) across the UK;
• a comic to help older adults explain and discuss their experience of chronic pain with grandchildren. The comic was created with Medikidz, `medical information for kids'. It has been adopted by NHS pain clinics in parts of the UK. Kent Community Health Trust have ordered the Medikidz comic: http://www.medikidz.com/shop/chronic_pain_explanation_for_kids.html

B. National pain management guidelines
The research also informed the national pain management guidelines, `Guidance on the management of pain in older people', which were developed and launched at the University of Greenwich in 2013. This represents the first such guidance in the UK; only two other countries have produced guidelines (USA and Australia). The guidance document, commissioned by the British Pain Society and British Geriatric Society, reviews the epidemiology and management of pain in older people via a literature review of published research. Its aim is to inform health professionals who work with older adults in any care setting on best practice for the management of pain and to identify where there are gaps in the evidence that require further research.

The guidance was published by Oxford University Press on behalf of the British Geriatric Society: an entire issue (2013. 42 supple. 1) of the high impact journal Age & Ageing was devoted to its dissemination. The guidelines have been widely adopted across the UK by a number of high profile charities, including the British Pain Society and the British Geriatric Society: http://www.bgs.org.uk/index.php/press/2471-managing-pain-in-older-people. Although the guidelines were developed for use in the UK, they are already gaining international attention and have been widely cited in the US by for example, the American Geriatric Society. Supported by funding from Dementia UK, a website was developed to promote the guidelines and support their use. They were launched nationally at a high profile event on 13 May 2013 http://kt- equal.org.uk/calendar/56/67-Technological-advances-to-managing-pain-in-older-adults-with- dementia. They have also been adopted in practice by ambulance services in two regions. The Pain Assessment Guidelines have been promoted by Health Professionals across the UK including the RCGP and RCN. The National Lead Clinician for Chronic Pain Healthcare Improvement Scotland, Dr Steve Gilbert (http://www.painassociation.com/what-people-say/dr-steve-gilbert/) is promoting them across Scotland: http://www.knowledge.scot.nhs.uk/pain/patient%27s-page/pain-in-older-people.aspx

C. National pain assessment guidelines and iPhone app:
The new `app' for assessing pain in older people has brought the national pain assessment guidelines to new audiences, and in a format which practitioners are finding very useful. It has already been tested in a feasibility study with the South East Coast Ambulance service, and received positive feedback from paramedics regarding its use for measuring pain in adults with dementia. The South East Coast service has adopted the app for everyday use. Other impacts of the app so far:

• It is currently being evaluated by the Ambulance service in two areas, and has already had a very positive response from staff.
• It has been added to the Scottish Pain Network Website.
• The app is now being adapted for use in Hong Kong; and
• it is central to a bid being developed for the National Institute of Health by Professor Cary Reid at Cornell Medical School in the US.

D. Summary of impact from HEIC:
The dementia and pain online training package is currently the subject of an evaluation within a local NHS trust and has been adopted by the South London HIEC website, where it is also available for open access. In addition, Kent Community Health NHS Trust has expressed an interest in the learning pack and are looking to add it to their Pain Standard.

How professionals are using the work
The University of Greenwich commissioned consultants to ask individuals in five key posts to assess the impact of this work. Their responses are summarised below:

The Chief Executive of the English Community Care Association: Department of Health Independent Sector Dementia Champion and Vice-Chair of the International Longevity Centre commented that 70% of patients in care homes have some form of dementia, and that pain can induce a range of challenging behaviours, which has a direct impact on the effectiveness and efficiency of care provision. Therefore, he has taken the Pain APP to implement across all of his organisations in the UK.

A GP based in Huddersfield who is the national pain champion for England, chair of the RCGP, and honorary secretary of the Pain Society commented that this work has given him: "...better evidence... the ability to do my job better...I apply this at every opportunity." As evidence of the reach of this work, he lectures in many countries, including Malaysia and Hong Kong, primarily to primary care practitioners where he always mentions and promotes Schofield's research as he considers her to be the "guru" on pain in older people.

The National Clinical Lead for Chronic Pain (Scotland) commented that within a short space of time, they are sharing the work with the professional local care community and care home staff across Scotland.

The Clinical Lead for the South East Ambulance Service who is responsible for Emergency Operations and the 111 service commented that the vast majority of the 2,000 operational staff are benefitting from the work, in particular by deploying the App when dealing with patients. He estimates that in 90% of cases, pain has been managed better since introducing the IPhone App. As pain is now being addressed as soon as possible, this often negates the need to visit clinics and/or hospitals. The iPhone pain App is included in the new Dementia Atlas, currently being developed by South East Coast Ambulance Service.

The Lead Nurse for Pain Management at Royal Brompton and Hatfield NHS Foundation Trust, who is also Chair of the RCN Pain and Palliative Care Forum, stated that the guidelines had changed practice and influenced the education of all health professionals working in the Trust. Pain is now the focus in 85% of instances, up from 70%, specifically due to improved pain scoring.

In summary, there was a general consensus amongst key people that the universal pain scoring and management system developed by the work of Schofield is now recognised as the `gold standard'. All the interviewees commented that it was a much-needed, significant, and insightful piece of work that was universally accepted and commended because it was patient-centric, displayed creditable science, and the recommendations and scoring system were very user-friendly.

Sources to corroborate the impact

Testimonials to support the National Pain Guidelines (Schofield et al 2013)

• Dr Steve Gilbert - National Clinical Lead for chronic health care improvement, Scotland
• Dr Anthony Passmore - Geriatrician/ Professor of Geriatric Medicine, University of Ulster
• Dr Martin Johnson - Royal College of General Practitioners, Pain `Czar' and member of the Pain UK Advisory Board
• Mrs Felicia Cox - Chair of the Royal College of Nursing Pain & Palliative Care Forum. Lead Nurse, for Pain Management at, Royal Brompton and Hatfield NHS Foundation Trust

Testimonials for impact iPhone App

• Mr Lucas Hawkes Frost - South East Coast Ambulance service - iPhone app and pain guidelines