The recovery journey of the NHS: a patient’s response to Berwick

For the past six months or so I’ve been on a journey, with others and a wonderful leader and with a huge task. As one of the patient representatives on the Berwick Review, I was given the privilege and responsibility of bringing a patient voice to discussions about what needs to be done to improve the safety of patients and the quality of care in the NHS in England. A daunting task, amid academics, senior clinicians and managers, but everyone was keen that the voice of the patient, both literally and virtually, be heard at every point of the deliberations.

I brought with me 25 years’ experience of being a frequent NHS patient, along with several years’ experience of working in the NHS as a healthcare clinician. Most of that experience from both a personal and professional perspective is in mental health, and this informed my contributions to the Review, complementing those of the two other patient representatives.

Like most people, I’ve had (and have probably delivered) good and bad NHS care. Some has been dangerously unsafe – I’ve been given the wrong medication, told to ‘pull myself together’ when suicidal and sent home when still severely ill. But I’ve also experienced nursing care so sensitive and supportive, that I would truly call those delivering it ‘angels’.

It struck me during the Review that there are great similarities between what we often call the ‘recovery’ process in mental health – that is, the aim of facilitating and supporting someone to lead a fulfilling and meaningful life – and the process that the NHS is currently going through. With recovery there is a frank appraisal of ‘where am I now?’ There are goals to be made and plans worked out to achieve them. There are measures to be sought for gauging progress and there's a need for support and guidance along the way. And it’s often very much a two-steps-forward, one-step-back trajectory. It is, as one wise person once said of mental health recovery, ‘a painful process’.

There has been much talk and writing previously about the need to listen to patients, to include us in planning and delivering our care and to be responsive to our needs. But I think most regular patients know that this doesn’t always happen – and sometimes to catastrophic effect.

Almost everyone can recount an episode of care that was far from satisfactory. Something clearly and definitively needs to be done to support the NHS in its recovery – to help it take more steps forwards than backwards. The Berwick report aims to support all the stakeholders and ‘actors’ in the NHS to do this and to once again try to weave the patient voice, our needs and our safe care into every one of the hundreds of thousands of interactions with NHS staff we have every single day.

What we are calling for in the report is not unreasonable or unachievable. It might seem obvious, but it sometimes isn’t clear – who is looking after me today, and who is responsible for my care? Have I had the opportunity to tell them everything about me I’d like them to know? Whether I’m in hospital or at home, who is coordinating my care? Now, this last one is a big ask, but surely a challenge that we should – in the days of (hopefully soon) joined-up IT systems and electronic patient records – be able to achieve. It will require ownership and commitment, but to someone with multiple and complex medical problems, it would make such a difference. And some healthcare providers are already doing this in the area of elderly care – it is achievable.

Similarly, it should also always be clear to us who is responsible for the safety of our care and who we should turn to if we, our family, friends or carers have any concerns. Someone, known to patients in every healthcare setting, must take responsibility and be accountable for this. And if we need to complain there should be a clear, simple and effective procedure for doing so. When things go very wrong and serious incidents occur that cause us harm, we should be kept informed of their investigation every step of the way and be given all the support we need to cope with their impact.

But we as patients also have a part to play in achieving a better, safer NHS. We should expect good care and try to speak out when things go wrong. When given the opportunity (as we increasingly will) of being involved in decision making processes – from giving feedback on the spot to sitting on the boards of trusts – we should be prepared to step up to the plate and say ‘yes, I’ll be part of the NHS’s recovery’.

Only in this way, through the gradual, steady implementation of all the report’s recommendations for increased patient and public involvement can we ever hope to achieve a better, safer NHS.

Ian Callaghan is the National Service User Lead for My Shared Pathway (a recovery and outcomes-focussed initiative in secure mental health services) and is a volunteer and campaigner with Rethink Mental Illness, www.twitter.com/ianmcallaghan