Community services, Health and social care, Patient experience, System design

Integration is about patient benefits, not organisational processes, says Don Redding

Don ReddingLast year, when the NHS Confederation asked you, its members, what major changes were required to meet future challenges, the vast majority of you (77 per cent) cited the integration of care – more than any other change.

With rapidly decreasing budgets, local authorities and health and wellbeing boards too are acutely aware of the need to bring services together more coherently.

Patients and service users will welcome this drive. “Integration, integration, integration” was the top demand of National Voices members when we voiced our views on Lansley’s reforms to the NHS Future Forum in 2011.

Yet, although veterans note wearily that efforts have been made to join up care over the decades, the track record so far is not one of notable successes.

Why should this be? One key reason is that once organisations start talking to each other about closer working, they begin to focus on their own processes and priorities, rather than making the benefits to service users the key yardstick.

And these conversations are bedevilled by different organisational perspectives on what ‘integration’ actually means, to the extent that one literature review found 175 competing definitions.

This context led The King’s Fund and Nuffield Trust to make two high level recommendations when they advised the NHS Future Forum and Department of Health on strategies to deliver integration.

First, that ‘the most fundamental prerequisite to the development of integrated care at scale is the crafting of a powerful narrative’ – a story that we can all share, about where we are aiming to go.

Second, that ‘the patient perspective’ should be ‘the organising principle’ for integration.

In response to these two concepts, National Voices, at the request of the NHS Commissioning Board (NHSCB), has developed a service user-led narrative and we would welcome your comments .

In this narrative, we no longer talk about ‘integration’ – it is not meaningful to patients. We redefine it as ‘patient centred coordinated care’, where the statement below is every service users’ realisation of care;

“My care is planned with people who work together to understand me and my carer(s), put me in control, coordinate and deliver services to achieve my best outcomes.”

What patients want, as our bespoke paper for the Future Forum noted, is for their care to be joined up. Whether the service organisations are actually joined up is secondary.

The narrative outlines a set of statements service users would be able to make if their treatment was well coordinated:

“I was always kept informed of what the next steps would be.”

                “I always knew who was the main person in charge of my care.”

                “That person helped me to get other services and help, and to put everything together.”

We suggest that if NHS commissioners and providers are able to adopt and work with these definitions and statements, it may help in making business cases and  creating strategies and plans that are centred on benefits to patients, rather than about organisational process.

We include a statement of what this would all mean for an organisation that adopted such goals, aims and benchmarks:

‘partnering the person to plan, pick and pull together care, support and treatment’.

We are confident that this outline narrative works from the service user’s point of view. But does it work for you? As we refine and complete it for adoption by the NHSCB and, we hope, many system stakeholders, only you can tell us whether it adds value to your sense of what ‘integration’ should be about.

So please, as the new NHS system takes shape, take some time to have a close look at the narrative and share it with colleagues and partner agencies. Knock it about, turn it around and above all, give us your feedback.

Don Redding is director of policy for National Voices, the leading coalition of health and social care charities in England working to strengthen the voice of patients, service users and carers.

About NHSConfed .

The NHS Confederation is the membership body for the full range of organisations that commission and provide NHS services. We are the only body to bring together and speak on behalf of the whole NHS. We have offices in England, Wales (the Welsh NHS Confederation) and Northern Ireland (Northern Ireland Confederation for Health and Social Care) and provide a subscription service for NHS organisations in Scotland.

Discussion

2 thoughts on “Integration is about patient benefits, not organisational processes, says Don Redding

  1. I am a little at a loss about where to start, so as Maria from The Sound Of Music says, “I’ll start at the very beginning”,(“a very good place to start”, indeed fraulein Maria, I concur). As a consumer of mental health services, and an Australian citizen, I will offer my humble opinion regarding eHealth, commencing with the fallacy in the title, claiming eHealth benefits the patient, as opposed to organisational structure. I can see no benefit personally in eHealth, specifically. Undoubtedly, integration of services may benefit the treatment I may be able to access, and any focus on the delivery, organisation, ideology, framework, or let’s face it, mental health as a whole, would be a great improvement on the past and current status of mental health generally. The “bad publicity is better than no publicity” (or something approximating this) statement of highly questionable veracity, is not true (at all!), especially in relation to mental health. We’ve done the “bad publicity” thing now for, well, ever. It hasn’t worked for me, or I am guessing, for any other individuals who have attracted a psychiatric diagnosis (or haven’t, but have been accused thereof, and this wasn’t usually a comment of concern regarding one’s “wellness” or not). In fact, person’s having lived experience of mental illness have been treated despicably, and continue to be treated so, more shame us. So when reading about my “benefits” and other such confabulations as “patient perspectives”, I feel we are in for more of the same. A “patient perspective” in it’s above context, is so disingenuous and condescending, I would be aghast where I not so used to such blather. My perspective of my narrative, or my healthcare history, is not a “perspective”. If I where a clinician of some sort, this would never be called as such. It would be written in my health record, then protected by legislation, secrecy, privilege, and would hereafter be treated as a statement of indisputable FACT. This may be on the basis of a 10 minute interview, and you know I do not exaggerate. Consumers of mental health services require many, many, things in relation to treatment issues. Simply put, we want to be treated as the majority of patients are. Like a cancer patient, for example. Or any other patient demographic receiving care, in accordance with the treatment location, frequency, cost, nature, duration etc. “I was always kept informed what the next steps would be”. Well I would bloody hope so! At a bare minimum. Especially considering issues of informed consent, family and carer notification and inclusion, pharmacological inefficiency and side effects seriousness, the psychotherapeutic necessity of patient contribution, if not leadership (some may enjoy an uninterrupted chance to practice their “disciplines”, but we all know a soliloquy is far more rewarding with an audience present. Not to mention a captive and paying audience). Bitter? Angry? Cynical? You betcha! I didn’t get here in a hurry, nor did I get here alone, unscathed, in better mental health, or with a benevolent “perspective” on those enforcers of “what’s in my clinical best interests”. The government suits who jump at any hint of a dog whistle, and perpetrate human rights abuses on consumers, preferring to facilitate, even encourage, violent seclusion and restriction practices, that always violate fundamental human rights, invoke terror and fear, victim blame, promote discrimination and enable practitioners (especially on a ward or residential location) to victimise patients in relative secrecy, at their whim, should they be so inclined (and yes, they are. Not all. But they are quite frequently inclined to violate a patient, arbitrarily restrict, ridicule, harass, assault, defame, infringe a patients rights to SOME privacy, demand adherence to”rules” used only to ease the staff workload, and countless, countless, more assaults on a human beings freedoms, integrity, legislative rights, physical integrity, cultural & religious beliefs, family, friends & carer contact, and an unending amount of nuanced degradations, insults, abuses, and restrictions, on a vulnerable and sick persons ability to LIVE (let alone recover, much less flourish). I am a consumer of mental health services at present. I have been for just over 20 years, since 18 years old. I meet with a psychiatrist twice weekly, and have done so for about 4 years. During this time I have also utilised community treatment teams, NGO’s delivering government mental health programs, been admitted in an involuntary status, and have undertaken intensive psychotherapy. Simultaneously. UNintegrated. I was not the patient at the centre of this activity. Nor is this account of the treatment I accessed my “perspective”. And where I not a mental health patient, as referred to in the “patient perspective”, it would undoubtedly be referred to as a “patient history”. It may even be included as “clinically relevant” and included in my (private, even from ME, for sincere and evidenced reasons that pertain to my ability to survive being witness to the TRUTH about my medical condition/s, or incurring some murkily undisclosed harm to my health due to finally being inflicted with reality, and the facts about my health status. Arse covering? Liability issues? Reduction in status, power, authority, control, privilege, or the opinion a patient may have of the provider)? Were psychiatric patients really valued as stakeholders in their care, we would at the very least receive equal care, rights, funding, opportunities, and be free from assaults and abuses of very fundamental human rights. Finally, studies confirm again and again the overwhelming number of mental health related suicides occur in the few days after discharge from an inpatient admission. I am acutely aware of this horrendous fact. I am acutely aware, though not surprised, and quite empathise with those individuals for whom hope was extinguished, and the possibility of this to ever change was incomprehensible. The hope for change, and the belief that too much has changed for hope to ever return, are not constructed by individuals in a vacuum. Please draw your own conclusions.

    Posted by Elouise Fitzgerald | January 30, 2013, 12:59 pm
  2. Although have registered to NICE as STAKEHOLDER dispite speaking out lots of MS and CCSVI its still being ignored. NHS would do more for MS if they did CCSVI for MS patients to give many a much better quality of life .

    Posted by LYNNE HEAL | January 21, 2013, 8:57 pm

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