My role as the first physical health Peer Support Worker within the Trust has been growing and developing week-by-week. The number of projects, studies and opportunities that are being offered is staggering. The variety of the work which I am being asked to contribute to is wide. The information I am absorbing which service users and carers might benefit from is similarly extensive. The whole experience in this new role could be summed up in a few short and simple phrases: “if only I’d known that before” or “that would have been worth knowing” or “that’s interesting.”

As I am at the interface between service user and service provider I can use that platform to inform and comment and maybe even offer some suggestions to both users and providers. I’d like to give a few examples of the value of knowledge and information and the contribution service users can make “to spread the word.”

The STarT Back programme, centring on low back pain, was introduced to me some months ago and its development and existence has opened my eyes and prompted me to question some of the outcomes. For those of you who are not familiar with the STarT Back approach to dealing with back pain, here is a brief summary with evidence comments.

Low back pain is a common complaint amongst the general population. The majority of patients will, over time, improve no matter what treatment they receive. However, a small proportion of patients can experience persistent low back pain. The STarT Back approach has been proven to be helpful in managing that pain and is supported by NICE (National Institute for Health and Care Excellence). It involves a patient completing a short questionnaire and explores the risk of that patient experiencing ongoing problems. This approach allows the clinician to decide the best treatment to help in the management of the patient’s pain and, importantly, has proven to significantly reduce disability and time off work.

The approach to treatment depends on the answers provided in the questionnaire. Some treatment will involve reassurance and education. It may also involve being referred to physiotherapy while some emotional and wellbeing support might also be identified. Currently Advanced Practice Physiotherapists (APP) are looking at ways of getting the STarT Back approach into routine physiotherapy consultations so that patients receive the most effective care for their back pain. There is a lot of evidence to prove its worth. NICE has recommended its use in their clinical guidelines. Public Health England (PHE) has determined its use in terms of return on investment for health outcomes. For every pound spent on STarT Back in primary care the return on investment is over £226. While the tool is being used regionally, nationally and internationally such a huge and positive return, clinically and financially, begs the question by this service user, “is it being used to its full potential? If not, why not?” As shared decision making, personalised care and “patients front and centre” are frequently used phrases these days, the use of the STarT Back tool, I feel, most definitely contributes to those ideas.

Contributing to ideas leads me on to another factor which I feel is very important and reinforces my blog title – the Patient Voice Matters. It does really matter! However, I have become increasingly aware that service users may not be taking the increasing number of opportunities to have their voice heard or take part in studies and projects where their views and ideas are so valuable and important. Contributions from service users and carers are welcomed by the Trust. I am not referring to satisfaction questionnaires or patients’ experiences, which themselves are very important to gather, but the chance to shape the future of the services and, maybe, the NHS as a whole. Patient and Public Involvement and Engagement is encouraged and its vitality is evident and obvious if service users get involved. Perhaps the word ‘research’ puts people off from becoming involved. Perhaps they are put off by that much used phrase, “research for research sake." It’s people with lived experience of conditions and treatments who enrich the search for facts and ultimately new ideas and ways of working.

Further examples with which I have been involved include:

A study into the effects and impact of the Covid-19 pandemic on people with arthritis and related conditions. This study will not break new ground in terms of medicines but is intended to inform service providers how managing such dreadful consequences as a pandemic might be considered differently in the future. Looking at mental health and physical health impacts as a consequence of Covid19 – for example – could help service transformation, generally.

The mental health and physical health issues for people with long term pain has, for a long time and continues, to be a concern. A study into the combined effects has resulted in a tremendous patient-focused resource. The BeeFree project outcomes were launched at the end of March 2021. A repository of information, a very informative website, online training opportunities and helpful tips for self-management has been the culmination of 18months work by dedicated volunteers and medical professionals. Volunteers who have that lived experience and can give the credible patients’ view. The BeeFree ‘hive’ of support resources can be accessed via the BeeFree Website or via Twitter @BeeFreeHealth.

The patient voice can be very effective and the BeeFree initiative is an indicator of its value too.

A new study which is examining the prevalence of musculoskeletal pain and its treatment in North Staffordshire is currently in the formative stages. Combining information gathered from service users with that from the primary care practitioners who are dealing with those patients will help decide how services can be re-shaped, perhaps re-designed entirely and potentially reduce, more importantly remove, inequalities and inequities in services.

Patient involvement and engagement is the life-blood that give studies, projects and research both strength and vitality. It is vital that new voices are heard. It’s vital that service users place themselves at “the front and centre” of these opportunities. After all, the services are there for the benefit of the user so why not contribute to its design. I did comment some month’s back that PPIE can be expressed two ways:

Patient and Public Involvement and Engagement

or

Please Participate, It’s Exciting.

There has never been a better time to help shape the future!

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