Archive | July, 2017

My final article

28 Jul

by Max Scott

Part nine of the series The desperate fight to be heard, and supported, when living with the invisible struggles of Multimorbidity

Introduction to the blog series is here.

Max Scott_My final article

Well, this is, sadly, my final piece for Greater Manchester PSTRC, on my own personal experiences with Multimorbidity. I have enjoyed the experience of not only having a platform to vent my own frustration, but to hopefully interest, inform, and help others in a similar situation.

Ironically, the update that I do have since my last post is a perfect example of why I wrote these articles in the first place – it is the ultimate case of a patient not being listened to.

I have been in receipt of Disability Living Allowance (DLA) since my Pituitary surgery in 2005. Well, this year my DLA was changed to PIP (Personal Independence Payment). I didn’t expect much of a problem, as all the evidence and back up from medical professionals was there to be seen. However, it did take a week of putting a couple of hours in a day, with the help of my wife, to get the PIP form done. Naturally, that proved very stressful and tiring for someone like myself who has severe chronic fatigue. The form asked if I would give my permission for them to contact any medical professionals who had treated me, and I agreed to this.

Much to our surprise, I was sent for a PIP assessment, which basically consists of having somebody who has never met you before fire questions at you for an hour, and ask if you can raise your hands above your head, bend your knees, and touch the inside of your leg with the opposite foot. Then it is “Goodbye, you should hear from us in six to eight weeks”. Well, I did. I had failed. Apart from the emotional upset and anger it caused, that meant a large loss of income to me and my wife after receiving DLA unquestioned because all the proof was there for 12 years. The only change during that time is that my conditions have become steadily worse.

Why did this happen? Because they completely ignored the facts. Not opinions, facts. They made sure that I was “two points short” in their scoring system. My wife is my carer, but they said I didn’t need a carer. I have memory problems, they said I don’t have memory problems. I have cognitive dysfunction, they said I did not have cognitive dysfunction. My wife has to administer my medication as I get muddled and make mistakes, they said I sort my own medication out. I have aids in the bathroom, including a frame, a raised toilet seat, and a squatting stool, for severe problems that have been medically recorded. They said I did not need these aids. Not only all of this… but they did not contact any of my doctors or specialists, seemingly because they knew that they would back me up. We applied for a reconsideration; they once again ignored the facts and turned me down.

We have put in an appeal and sought the back-up of our local MP, and he was only too happy to help as he could see the decision was nonsense. We are now in the process of waiting for the date for this appeal, something made even more painful as we are also going to have to attend a coroner’s inquest into the passing of my dear Mother last December, and this is expected to take place between October and December.

In summing up, I can only say how sad I am that, during the process of my series of articles, nothing in the way of Multimorbidity services has happened, no progress has been made for the many sufferers of this life-changing affliction, and I cannot see anything changing in the near future. Marching down Whitehall to Downing Street, chanting and waving placards is not for us… most of us haven’t got the energy! But, eventually, somebody of influence needs to make a noise about this, and the only way for that to happen is to somehow voice our unhappiness and frustration as much as we can and to whom we can, until the term “Multimorbidity” is no longer met with bewildered looks from the vast majority of the population who have never heard of it.

In conclusion, I’d like to wish Greater Manchester PSTRC all the best in its future research and endeavours. To all who have read my articles and have a daily struggle with their health, thank you and I hope you find something that makes life that bit easier and more enjoyable. Perhaps that may even be in the form of a medical practitioner who… listens.

Why does PPI benefit research?

13 Jul

by Sally Giles, Research Fellow in Core PPI Research theme and Philip Hammond, PPI Coordinator

PPI blog post_July2017

Why do PPI?

“All organisations should seek out the patient and carer voice as an essential asset in monitoring the safety + quality of care” Berwick Review, July 2013

We believe that including the patient voice in our research makes it more meaningful and relevant to the real world.  We have experienced examples of when patient feedback has influenced our research.  As part of the Greater Manchester PSTRC we wanted to look at how PPI impacted on our research in an academic context.  To do this we had a look at the academic literature, firstly to find out why people involve members of the public in their research. We discovered that people who use health services can help to ensure that issues that are identified and prioritised are important to them and therefore to health care, public health and social care as a whole.  Public involvement can help to ensure that money and resources are not wasted on research that has little or no relevance and that being involved in research can help empower people living with a medical condition.  We used this as a basis to develop our own PPI structure within the Greater Manchester PSTRC.

The Research User Group (RUG)

The RUG started off as a group of 12 members of the public, who met every 6 weeks.  Each of the research themes within the Greater Manchester PSTRC were allocated 2 or 3 members to their theme.  A RUG evaluation highlighted that some researchers were heavily reliant on their aligned members for all projects within their theme.  It also highlighted that it was challenging to see how the RUG was having an impact on research, as this impact was mainly happening at project level.   Based on feedback of RUG members and in an attempt to widen involvement by bringing in more associate members of the public, a restructure to the RUG took place.  It was agreed that there should be a split between governance and project level PPI.  This new structure was implemented two years into the centre.

The restructure enabled us to focus more on project level PPI, and we have a number of examples of how PPI has benefitted the research on specific projects.  Some examples follow below:

1.   Multimorbidity Research Advisory Group (MRAG) was set up to involve patients and carers in the development of resources and new research projects for the Multimorbidity theme.  It consisted of 18 group members who provided feedback on research, shared ideas, helped to set research priorities and supported two applications for further funding.

2.   In the Interface & Informatics theme patients and public contributors have been involved in enhancing research by taking part in a number of  sessions aimed at investigating the relevance of an established patient portal for patients with long term conditions (PatientView) and identifying strategies for improvement. This group also commented on draft study protocols, designed and co-facilitated a larger workshop and helped to identify social media and patient associations as an additional recruitment strategy (resulting in 25% more recruits).

3.      In the Medication Safety theme members of the public have been involved in the recruitment of participants for focus groups, co-facilitation of focus groups and coding of transcripts using an existing framework.

4.      For the Core theme members of the public have helped develop the Primary Care Patient Measure of Safety (PC_PMOS) study.  They helped to develop the items to be included in the PC_PMOS and recruited patients in GP practices to complete the PC_PMOS, Patients were able to relate more easily to the PPI members than the research team, which helped to increase participation in the study

5.      In the GP theme there has been public and stakeholder involvement in the patient safety guide project via 3 different involvement groups with key stakeholders.

Thoughts for the future

Our advice to anyone wanting to develop a PPI structure within a large (or small) research centre is to plan carefully by starting with a clear strategy, but be willing to accept that this will constantly change as the needs of those involved evolve.  Involvement needs to continue to be an iterative process, people have different (and changing) needs and get involved for different reasons, and equally research studies have different aims and priorities which need to be addressed when planning involvement.  We see involvement as being broader than patients or members of the public.  Often the end users of our research have been health professionals and as such, our definitions of involvement and engagement have evolved to include all relevant stakeholders.

Introducing…Safety in Marginalised Groups: Mental Health

5 Jul

by Nav Kapur and Roger Webb

shutterstock_640908130_mentalhealth

Safety in mental health services:  reducing suicide and self-harm

Nav Kapur, Research Lead, says:

‘It’s fantastic to be involved in the new NIHR Patient Safety Translational Research Centre.  It is particularly exciting that safety in mental health services will be a prominent part of the new work.  We are really looking forward to getting started.  We will be making new appointments (both Research Associates and funded PhD students) in order to make this a world-beating research programme.  The focus on both suicide and self-harm is really pertinent given the current policy and health priority on these very important outcomes.  So over the summer and autumn we will get going on the actual research using a variety of methods.  Personally I can’t wait to start working with the internationally-leading team of researchers, academics and clinicians across the PSTRC’.

Roger Webb, key project lead, says:

‘I’m enthused by this wonderful new initiative, which enables our Centre for Mental Health and Safety to join forces in working collaboratively with a much larger group of internationally renowned experts in the patient safety field. Our planned work programme, focussing on self-harm and suicide, encompasses a number of ground-breaking studies.

These studies include:

  • evaluating how changes to health service provision may impact on national suicide  rates
  • developing and testing psychological treatments following self-harm
  • investigating key transitions from institutional care to living back in the community, among discharged patients and released prisoners with enduring mental health problems
  • assessing clinical management of common mental health problems across healthcare sectors, and subsequent risks of self-harm, suicide and other causes of premature death.’