How I became involved in Patient and Public Involvement 

I like to think that patient and public involvement (PPI) for me was no accident. I had been a volunteer as a child and throughout my adulthood. At senior school, I  supported a friend of the family to learn braille and I also volunteered once a week at a home for disabled people. Shortly after college, I took a short course in signing and this was followed by several years volunteering at a hospital radio station, all of which have helped me to develop skills which have greatly assisted me in PPI.

I like to think my future was already mapped out but my journey into PPI stemmed from family illness, and in particular my experience of palliative care. My grandmother had excellent palliative care in a care home – it was warm & compassionate. I’d want others to have that too. At the end of life, she spent 8 days in a room on a special corridor – staff ensured she was never left alone. My uncle did most of the visiting and I was grateful for that. I was caring for my mother who was ill. Two years later, my mother’s palliative care was clinically efficient on a busy cancer ward but lacking in kindness, compassion & access to palliative care specialists. It was even hard to see the Macmillan nurse. The contrast between palliative care in a hospital compared to the care home was striking and something I won’t forget. I knew I couldn’t ‘let this go’, I had felt powerless regarding my mother’s situation but I could try to help others. 

My grandmother’s stay in a care home was also my introduction to dementia. There had been signs of memory loss but it was  gradual, my mother & I who had lived with her for 30 years barely noticed. It was more obvious to relatives and friends who saw her only occasionally. While her rapid deterioration was a shock, I soon became familiar with life in the care home. I  quickly became involved – organising an entertainer and a large party to celebrate her 90^thbirthday. Subsequently, I became a fundraising volunteer as part of a keep fit team. I gained lots of experience in talking to care home residents & relatives, who were happy to speak to me and were forthcoming about their care.  This really helped me when I became a volunteer as a member of a local health forum. One of my first experiences was undertaking inspections in care homes with nursing care for a local authority. Much later I became an Expert by Experience for the CQC, carrying out inspections in care homes and psychiatric wards.

I also have experience of supporting my 91 year old uncle who lives in a nearby care home. I’d never been approached regarding palliative care but COVID changed that dramatically. I had an urgent call from the nurse and difficult decisions were made regarding a number of possible scenarios, particularly around anticipatory care. Yet once we’d made these decisions, I felt a sense of relief. I felt I had done my best for my uncle.

My own physical health has also worsened. Being diagnosed with a rare autoimmune illness has perhaps developed my empathy with others as well as being another catalyst for my introduction to PPI. One of my first PPI positions was on palliative care and it was an esteemed one as a carer member on the National Cancer Research Institute Clinical Studies Group on palliative care and the sub group on management of pain. I was working with several eminent palliative specialists, and this led to me receiving an award in 2019 for outstanding contribution to research (palliative care). 

How much PPI have I been involved in so far?

In PPI, we always say early involvement is crucial.  In the Needs Rounds project, that happened naturally  because I’d worked with the study’s chief investigator previously on another project. My PPI to date on this project has been more inclusive than usual. I’ve been involved since the grant application stage,  where I recommended a couple of PPI representatives I’d already worked with to be included, who have both fitted into the project so well. Other tasks were reviewing a Patient Information Sheet and commenting on the format and wording of a questionnaire for staff.

Being involved in the Research Fellow’s appointment as part of an interview panel was an exciting opportunity. I’d thought it would be fun. In reality it was very hard work and perhaps exposed my lack of IT skills. The Chief Investigator supported me throughout so this resulted in me having much more contact with her than I’d usually have. 

Leadership on the project is strong – we are given precise instructions and deadlines. This has led me to see the importance of everyone being on the same page. We are kept up to speed with regular emails and catch ups.  Above all, there is always equality of opportunity when tasks are allocated.

Now I have met the rest of the team and been appointed to the Steering Committee.  At meetings I always feel comfortable speaking and contributing. More recently I had experience preparing the ethics application for submission. The Chief Investigator kindly invited me to attend the NHS Ethics Committee meeting. This entailed me giving consideration at a deeper level but on the day, the committee didn’t give me the chance to contribute – a disappointment. I could’ve drawn on my lived experience of supporting relatives in care homes, and spoken about my experience in communication, languages, and working with care home champions. Nevertheless, it was a worthwhile experience.

Support in this project has been incredible. We were sent the Complete Beginner’s Guide for using Twitter – this was helpful and something I wish to develop in the future. We were also asked to contribute to the first Newsletter – an enjoyable task and one which prompted me to write this blog.

My hopes for involvement for the rest of the study are developing a coding framework in order to perform a thematic analysis; co-authorship of papers including one on evaluation of PPI; co-presenting at conferences as well as contributing to the final report. 

This is the third co-applicant role that I have ever undertaken. So far opportunities have been numerous and varied. I am beginning to acquire PPI as a specialism and that is so valuable to me. I would certainly recommend it to others.

Margaret Ogden, PPI representative.