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Safety in Marginalised Groups: Why a new theme for the PSTRC?

1 Feb

shutterstock_640908130_mentalhealth

Much of the work that took place in the first NIHR Greater Manchester PSTRC focused on involving patients and carers in its work. Examples of this were the James Lind Alliance Priority Setting Partnership, and public engagement events such as The Nest and More Than Just a Number.

In the second incarnation of the Greater Manchester PSTRC, one of the four themes, and a new theme for the centre, is Safety in Marginalised Groups. This research theme will focus on improving patient safety for marginalised groups of people, who are at a higher risk of harm within the healthcare system. The increased risk can be caused by a number of factors, for example, we know that Black and Minority Ethnic (BME) groups have poorer health outcomes, as well as poorer access to, and experiences of, healthcare services. People may also be marginalised because of stigma and poor access to services for specific conditions (e.g. mental health problems). Or they may be marginalised because of the circumstances or settings in which they live (e.g. living alone, caring for someone at home, living in a rural setting, in a care home or prison, or being homeless).

This theme has two main strands of research: the first on mental health and the second on patients and carers. Over the next five years, the Safety in Marginalised Groups theme researchers will work closely with researchers in other themes to explore a number of key issues, challenges and opportunities for improving safety in marginalised groups including:

  • communication
  • self-management: the co-design of tools to aid patients in their healthcare journeys
  • using mobile technology to monitor health.

A major component of the new theme will be mental health and it is particularly exciting that the PSTRC will be teaming up with the Centre for Mental Health and Safety. Some of the key safety outcomes in mental health involve suicide or self-harm. The proposed programme of work will look at the components of a ‘safe mental health service’ as well as investigating treatment gaps in the care of people who self-harm.

Find out more on our Safety in Marginalised Groups webpage.

How do I get more involved in my patient safety?

1 Feb

Patient Safety Guide_combined images with arrow

We have been working together with patients, carers, members of the public, GPs and pharmacists to design a PSTRC patient safety guide for patients and carers. This will be a useful resource to help answer key questions about primary care patient safety and to identify points where patients and carers can make their own care safer.

The guide consists of a short booklet, website and cue card prompts which people can use flexibly:

  • to plan for a consultation
  • as a memory aid
  • to help make the most of the time a person has with a healthcare professional
  • to support their own care at home.

As part of this project, the PSTRC has held co-design events which have brought together members of the public, patients, carers, GPs and pharmacists to discuss how everyone can work together to make care safer. Discussions have focused on key points in the care pathway and actions that each person could identify to improve their patient safety with the priorities that were identified for their own care. These discussions were then used to develop and refine the guide.

Since completing the initial development stage of the patient safety guide, work has been taking place with key national stakeholders to further refine the guide and the centre will continue to co-develop the project and the testing of it with patients, carers and healthcare professionals.

If you’re interested in hearing more about the guide, or to find out more about future co-design events, please contact Rebecca Morris at rebecca.morris@manchester.ac.uk.

New Theme Overview: Safer Care Systems and Transitions

1 Feb

Safer Care Systems_banner_hospitalpatientdoctors

The research for this new theme will take place at the Universities of Nottingham (lead: Justin Waring) and Manchester (lead: Stephen Campbell) and sites of study include hospitals, mental health services, community pharmacy and primary care.

A patient’s journey through different parts of the health service is called a “pathway,” and it is already known that patients can be put at particular risk when they move along their pathway and receive care from different organisations. Concerns for patients might include: “Has all the relevant information been passed from my GP to my hospital consultant (or the other way round)? Am I getting the same advice from different health professionals about my health problems or are people giving me contradictory advice?” Patient transfers, i.e. when people are in between different services and perhaps reliant on self-care or support from family members, can bring additional risks.

In this theme, these issues will be explored in four main topics:

  • ‘mental health’ (also in collaboration with the Marginalised Groups theme)
  • ‘information storage and transfer systems’ and ‘patient-held care records’ (both in collaboration with the Safety Informatics theme)
  • ‘governance and regulation’ (in collaboration with the Medication Safety theme)

Specific research projects being worked up include threats to safety in mental health transitions, and the potential role of patient-held care records in improving safety across the patient pathway. Through this programme of work, the key factors in transitional safety will be identified, followed by the development and testing of new systems of routine data collection and analysis to measure them.

A New Approach to Governance – Non-Executive Lay Members on the Greater Manchester PSTRC Executive Management Board

17 Jan

by Dave Edwards

  • Lay Non-Executive Member of GM PSTRC EMB
  • Lead Governor, Manchester University NHS Foundation Trust
  • PPI Participant in Research – UoM Division of Cardiovascular Sciences/Salford Royal NHS Foundation Trust
  • OUTREACH Trial Steering Committee Member – MAHSC @ The Christie Hospital NHS Foundation Trust

Governance.jpg

Rationale

For the latest embodiment of the Greater Manchester PSTRC, it was decided to enhance the governance of the Centre by adding a lay dimension to the process. The intention is to broaden the accountability of the Centre by providing a challenging influence at Executive Board level which is not motivated purely by the academic and research aspects of the group, rather by an independent or external view of the workings of the Centre. Assurance on features such as budget, timeline & milestones, adherence to the Centre’s primary brief and purpose and its actual achievements can thus be measured in a more rounded way.

Action

As a result, the position of non-executive lay board member has been created, with the intention of having two such people on the EMB.

Benefits to the Centre

With a lay aspect applied to the governance of the Centre, the following challenges, amongst others, can be more objectively presented during the assurance seeking process at management board meetings:

  • Is the Centre fulfilling its general brief?
  • Is the programme of events going to plan?
  • Do any methods or processes need considering for modification in any way?
  • Are the ongoing activities proving to be appropriately relevant?
  • Are any ‘spin-off’ benefits being realised?
  • Is the Centre performing in accordance with the designated budget?
  • Is the Centre performing such that its reputation will generate further opportunities?

Bearing in mind the above, it seems reasonable to expect the Centre to operate in a more direct and effective way, which will in turn improve the outcome and enhance the experience of not only those participating directly in the research themes but also those managing and supporting the venture.

Benefits to the Lay Non-Executives

As far as the non-executive lay board members are concerned, I see the satisfaction of taking on a challenge, contributing to the success of the Centre and widening one’s experience as providing good enough reason for becoming involved. Moreover, meeting the wide range of people involved in carrying out the role is a bonus to me.

Patient safety and children with long-term health conditions

4 Sep

by Sue Kirk, Professor of Family and Child Health

Juvenile diabetes patient with his mother

Increasing numbers of children and young people are living with a long-term health condition such as diabetes or asthma. Over the past 20 years we have also seen more children with complex healthcare needs being cared for in their own home rather than in hospital.  These changes have led to parents (and the children themselves) taking on roles and responsibilities that would have been unthinkable in the past. This includes monitoring their individual health, managing their own medication and treatment, using complex medical equipment such as ventilators, acting as care coordinators, and in some cases organising and managing home care teams.

Parents and young people don’t only manage these health conditions within the relatively controlled environment of the home. Children and young people go to school and college, take part in social activities with their peers and families, go on holiday and may spend time in hospices and other care settings. They may also receive services from a vast array of health, social care and voluntary sector organisations. This presents challenges for communication, both between professionals and between families and professionals, and consequently for care integration. This is worsened as young people transfer to adult services.

Surprisingly there has been little research that has examined patient safety for this marginalised group. We don’t know how families or health care professionals understand, monitor and manage safety in this complex situation or how safety could be promoted and improved.  This is what we intend to look at as part of the Safety in Marginalised Groups: Patients and Carers theme of the Greater Manchester PSTRC.

Placing ALL patients and carers at the heart of patient safety research: introducing our new theme on marginalised groups

23 Aug

by Caroline Sanders, Research Lead in Safety in Marginalised Groups: Patients and Carers

Inclusion_raised-hands_small_AdobeStock_69187814

In his 2013 review for improving patient safety, Don Berwick emphasised the importance of seeking out the voice of patients and carers, and ensuring they are ‘present, powerful and involved’ at all levels. This has been a major focus of our earlier research, our involvement and engagement work, and led to our priority setting partnership in conjunction with the James Lind Alliance in March 2017. This identified the number 1 question for future research is to understand ‘How can patient safety be assured for the most vulnerable in society?’. This recognises the widespread concerns and evidence showing that patients and carers who are already disadvantaged and marginalised, may also be at greater risk of harm within the healthcare system.  Additionally, we have not yet done enough to ensure we hear the voices and understand the experiences of marginalised groups to be able to develop appropriate and effective interventions to support patient safety for ALL patients and carers.

Our starting point for the new research that will evolve along with our further Patient and Public Involvement (PPI) work, is to acknowledge that people may be disadvantaged and marginalised by multiple factors such age, disability, ethnicity, sexuality, gender, and socio-economic disadvantage.  For example, we know that BME groups have poorer health outcomes, and poorer access and experiences of healthcare services. People may also be marginalised because of stigma and poor access to services for specific conditions (e.g. mental health problems); or they may be marginalised because of the circumstances or settings in which they live (e.g. living alone, caring for someone at home, living in a rural setting, in a care home or prison, being homeless).

In this theme, we will be working closely with other themes and our PPI contributors to focus on and understand safety risks and concerns for specific population and patient groups. For example, what are the particular challenges in relation to communication, which we know is considered by patients and carers to be a crucial foundation for safe care? What are the challenges for marginalised groups of patients in the ever-changing care context, where there are new responsibilities and health care practices expected as a part of enabling better self-management? We will co-design or adapt tools to support patient safety that will be tailored for such groups.  This may include use of mobile apps or other technologies, and we will also focus on the help and support that people might need to make sure they can use these, or enable appropriate alternatives. We know this means we need to be creative in reaching out to communities and groups who currently feel disempowered or hidden in relation to healthcare research and service provision. We are looking forward to this exciting opportunity to seek out some of the quietest and most hidden voices to ensure the most vulnerable can have better and safer care.

Please see our webpage or contact us for further information or to share any comments and suggestions.

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.