People in control of their own health and care: The state of involvement

Part of Working with patients, service users, carers and the public

The idea that people should have a stronger voice in decisions about their health and care, and that services should better reflect their needs and preferences, has been a policy goal of politicians and senior policy-makers in health for at least 20 years. Patients want it, and the evidence shows that when they are involved, decisions are better, health and health outcomes improve, and resources are allocated more efficiently.

Despite this, and some small pockets of improvement, there has generally been a lack of progress towards fully involving people in their own health and care. This report examines the reasons behind this, and considers how we can advance the cause of making person-centred care the core of health and care reform.

Key findings

For all the main types of individual involvement in health and care there is:

  • good or reasonable evidence of its potentially beneficial impact
  • good or some evidence for how to do it well
  • a clear, stated policy commitment, but with varying degrees of active national support
  • some examples of excellent local practice
  • a general continuing lack of systematic progress or improvement.

To facilitate changes that will ensure greater patient involvement, we need:

  • consistent and meaningful national support
  • to recognise and address the different perspectives on involvement
  • to meet the leadership challenge
  • a new compact between citizens and services to empower citizens as patients, carers, clinicians, managers, and community workers to be active and equal partners. 

Putting involvement at the forefront of policy and practice provides the opportunity not only to create an effective and sustainable health and care system, but also to contribute to a more equitable and healthier society. 

Policy implications

NHS England's programme of work on transforming participation provides a first step, but more must be done. In particular, national bodies need to:

  • develop a model of professional education and training based on working with users and citizens
  • provide staff and patients with access to high-quality tools for structuring and recording care-planning and shared decision-making
  • measure involvement and hold organisations to account
  • enable local organisations to focus on patients not politicians, with a national approach to reform that supports organisations to lead change locally.

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Comments

Prof Shahid Ali

Position
GP & Professor of Digital Health,
Organisation
University of Salford
Comment date
08 November 2014
Re: Patients in control of their health and care

It is great to see this publication as it chimes with all the work I have done at practice level, regionally and nationally in the NHS. I have been advocating this for years and have shown that it works in British General Practice. However, trying to scale this approach has its challenges, particularly around the cultural change agenda as your policy implications point to. This led me, working with my colleagues and Microsoft, to develop a scalable solution called VitruCare which we have now deployed in several settings across the country and is providing evidence that engagement is possible at scale to patients enabling control and improving outcomes. Happy to discuss further with you if you wish.
Shahid

Bernd Sass

Position
Strategic Partnership Manager,
Organisation
Disability Rights UK
Comment date
09 November 2014
I'm quite disappointed by this report. Where are the reasons described behind "lack of progress towards fully involving people in their own health and care" as announced? Where is the groundbreaking initiative to invest in (disabled) people rather than the usual stakeholders to explore, define and deliver peer-led activities for and by themselves? Surely, this lived experience should also form the core of public engagement and thriving communities more broadly. Perhaps it is time that decision-makers don't just look at the established institutions like KF but start to grasp the grassroots level of 'user- driven commissioning' and help end the fragmentation in PPE? Was there not a time when patient-led commissioning groups were envisaged?

Mark Warburton

Position
Strategic partnership development,
Organisation
Medequip Assistive Technology
Comment date
11 November 2014
A very valid question Bernd. As a provider in the Community Equipment Services sector supporting Social Services/NHS Partnerships we are certainly seeing the positioning of the concept at local levels and there is, without doubt, evidence of intent. Perhaps the true measurement of the impact of the proposals leave local interpretation (and implementation) hidden too deeply in the long-term planning of future services? Application of PIP is not suited to the structure of current services in this sector yet the need for incorporation is highly visible and common in all dialogue with CCGs, LAs and other Commissioning bodies with whom we are engaged. Personally speaking, I see the integration of personal budgets at the sharp end as possibly being 'too commercial' for Commissioning bodies to be comfortable in taking the lead on. There are synergies required that perhaps are not established enough in the main for evidential reporting at this stage??

Ruth Dineen

Position
Director,
Organisation
Co-production Wales
Comment date
12 November 2014
Involving citizens as true partners in their health is not just a more effective way of delivering services, it is a matter of social justice - in Edgar Cahn's words 'no more throw-away people'. We're ahead of the game in Wales on this one. Our Social Services & Well-being Act has co-production principles embedded in the regulations and code of practice with a shift from outputs to personal outcomes - what matters to the individual - via the co-produced National Outcomes Framework. And principle 5 of NHS Wales' Prudent Healthcare strategy requires a realignment of 'the relationship between user and provider on the basis of co-production'. There's a distance to travel between words and deeds, but the context for transformation is in place, strongly championed by Health Minister Mark Drakeford and CMO Ruth Hussey. An article on the potential of co-production, and the barriers to its implementation, is here: www.prudenthealthcare.org.uk/coproduction

Karen Arnold

Position
counsellor,
Comment date
16 November 2014
As someone with three chronic conditions that I have suffered from for 15years ,I am lucky to have a partnership with my GP's years ago I not only attended Input at St Thomas' s hospital but also attended the Expert Patient program both of which not only gave me the skills to take control of my conditions but also enabled me to have more quality of my life. I have still encountered Doctors who talked down to me ,but I am confident in my Gp's. I have now trained as a counsellor , greatly reduced my dependency on both prescriptions and attending doctors or hospital , and the greatest gift has been able to have the physical ,emotional strength to nurse both of my parents in their own homes, allowing them to die in their own beds.
I also have spent 10years working as a volunteer for Cruse Bereavement Care with clients aged from 7 to 87. Without Input and the expert patient program i would not have achieved any of this, the investment in me has been repaid 10 fold. I wish that others could have this experience , be incontrol of their treatment and care and know that they are respected to know their conditions and be an equal in their own care.

Bob Miller

Position
Volunteer,
Organisation
Ward 19 Patient participation team RVI N'cle
Comment date
18 November 2014
I'm a member of the Patient Participation Team at Ward 19 at Newcastle RVI which provides peer support and volunteer led services for people living with HIV, their partners and carers. We have been running for 11 years now and provide a one to one listening service, an input into the training of medical, psychology and nursing students, social events, support events such as world AIDS day, have members who lead sexual health teaching in secondary schools, close liaison with doctors and psychologists and have recently delivered the first Positive Self Management Programme to 10 patients. All this is done on a voluntary basis and our input is highly appreciated by the professionals.
We are trying to spread the word of the success of our group around the Newcastle Trust and to other providers of services to people living with HIV around the North East region although with no tangible success as yet.
I'm surprised and disappointed that this report has found so little patient participation around the country especially as it has been so successful for us.
I realise that it is easier to do this with people suffering from long term, chronic conditions that for those with acute, curable illnesses but it seems it is not happening even for those easier to reach groups let alone in GP practices. I have been a member of Patient Consultation Groups at two GP practices at one we had one meeting a year at at the other it's just an email every now and then.
Lots more to do NHS!

Pearl Baker

Position
Carer/Independent Mental Health Advocate and Advisor,
Organisation
Independent Advocacy
Comment date
22 November 2014
I do not agree that it is easier for those with long term conditions. Patients with long term Mental Illness are often left with no care and support other than their families, generally speaking the majority of carers have no idea of their siblings rights within the Law, let alone the latest DOH Policies.

There is no individual within the Statutory Services responsible for informing the patient of their rights.

I am trying to understand how can the enormous amount of money being allocated to Mental Health is being used for the long term mentally ill, when there is no actual 'Monitoring' taking place.

I would suggest the CQC should incorporate. the Inspection of CPA Plans when Inspecting GP Practices has to be implemented.

The MONITOR is responsible for monitoring 'Integration'. There is no evidence that he is doing this.

The CQC would inform the 'MONITOR' when they discover that ongoing Assessments are not taking place as instructed by the DOH, in particular when very vulnerable patients are being neglected.

Nigel Horwood

Position
Patient,
Comment date
19 March 2015
I've tried to explain my reason for wanting greater patient involvement in one sentence. This is what I came up with - "My consultant is the expert in my condition; I am the expert in my health".

Nigel Horwood

Position
Patient,
Comment date
19 March 2015
I've tried to explain my reason for wanting greater patient involvement in one sentence. This is what I came up with - "My consultant is the expert in my condition; I am the expert in my health".

Mike

Comment date
09 July 2016
It's shocking that we know what works and yet the NHS just doesn't do it. The NHS is the most medically negligent organisation in existence when it comes to mental health. They are just awful. I've had more help from Google and a stray cat. No joke!

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