PAG Blog: Neil Betteridge - 'Nothing about us, without us'
Tuesday 17th October 2017
Neil Betteridge is a Patient and Public Advisor for the NHS, an Improving Quality Co-Chair, Chronic Pain Policy Coalition & a Representative for the CRG Specialised Pain Services, NHS England. He works with Heart Valve Voice to ensure that we are optimising our patient advocacy and patient involvement. Here he talks about his work and how he has dedicated his time to see to it that patient’s voices are loud and clear.
For me, there is not just an obligation, but a duty, for medically focused organisations to ensure that their goals are informed, and indeed led, by the voice of the people whom they exist to serve: patients, and those who support them. Since moving on from the position of Chief Executive at a large 'patient group' (Arthritis Care) some 6 years ago now, I've now adopted what used to be called a portfolio career. Lucky enough to work with a range of inspiring organisations and individuals, across disparate settings and sectors, the issue of patient involvement in voluntary sector health charities is one which I feel passionate about.
Not that this is always easy to achieve! When issues around treatment options arise, for example, it is natural that healthcare professionals raise their voice to ensure that their expertise is helping to shape the debate and influence policy. But in my view that should be as well as, not instead of, the voices of individuals who have been through their intervention and who have their own expertise to offer on what the real needs and wishes are of patients more generally.
In other words, people who have any condition being discussed by clinicians, policymakers and others with influence, have a right to be involved in those discussions. After all, they affect their treatment, their care and their lives.
As a volunteer in several organisations over the last 25 years, my rallying cry has been 'Nothing about us, without us' (a couple of decades before the government came up with a White Paper entitled 'No decision about me, without me', by the way!).
It is this clear and explicit commitment that Heart Valve Voice dedicates to this principle which makes me so proud and excited to be involved in its work.
Across the board from Wil Woan, Heart Valve Voice CEO, to the Trustees and all the volunteers involved - there is a shared view that patients should be at the heart of everything the organisation does. It is highly apparent to me that this has helped create a culture of empowerment throughout the charity. Patients are not involved tokenistically, but as real drivers for positive change. The Patient Action Group (PAG), for example, is already an embedded force within the charity, but just as importantly as an externally facing part of the organisation too.
This means that if you are listening to the radio and lucky enough to hear the media picking up on heart valve disease, you are just as likely to hear Pat Khan or another member of the PAG speaking out about what matters to patients with this disease as you are Chris Young as Chair of the Board providing the viewpoint of an expert clinician.
Heart valve patients past, present and future can be proud that they have an organisation on their side working hard to observe this focus on the patient, so that advances in treatment options and support services will always have the patient voice at its heart.
That has to be the best way to promote prevention, early detection and diagnosis, and the best possible interventions which allow heart valve patients the opportunity to get back to what we all want - an independent life where where we are free or choose what we do and how we live.
I don't think that's too much to ask, do you?
This is exactly as it should be. Modern healthcare delivery should be a partnership between the multidisciplinary healthcare team and the person who matters most, the individual patient.
To quote my fellow Warwickshire countryman W. Shakespeare, this is a principle usually more honoured in the breach than the observance!