To mark World Arthritis Day, Jamie Hewitt, government affairs manager at the National Rheumatoid Arthritis Society (NRAS), looks at how the present shape of the Health and Social Care Act is hindering the very laudable aims to engage patients
It is not for me to say whether Labour’s pledge to repeal the Health and Social Care Act, if re-elected to office, is the best way forward. However, as someone who works for a health charity and who tries to engage positively with all sides of the debate, I can say the issue is certainly not black and white.
In fact, no party would disagree with the worthwhile aim of trying improve clinical outcomes for patients – as proposed by the coalition government – the main disagreement is really over how to go about achieving this. Setting aside the well rehearsed arguments around enhanced privatisation and competition for one moment, I want to instead concentrate on another facet of the reforms that rarely seems to get a proper airing in political debate: patient involvement.
Through the ‘Equity and Excellence: Liberating the NHS’ White Paper and the subsequent Health and Social Care Act, the coalition government has championed the role of patients (and quite rightly too) as co-designers of health services, as ‘shared decision-makers’ in relation to their own care, and even as sources of important feedback to assess the performance of local NHS services and help improve patient safety and drive up quality. Absolutely fantastic.
There’s just one small problem however. Have you ever actually tried sitting down and explaining the health reforms to a room full of patients? I have on numerous occasions, and whether it is about the physical reorganisation or the quality framework that underpins it, patients nearly always struggle to understand the reforms and lack the motivation to get involved.
In fact, I watched recently as one of our local volunteers (a former professor no less) recoiled in horror at the charity’s suggestion he get involved in a local HealthWatch after already being active in his local Clinical Commissioning Group’s affiliated patient group. He didn’t have the time and, most importantly, he said he felt baffled by the sheer the complexity of the reforms.
I shouldn’t have to point out that this is serious stuff. On the one hand we have the very laudable aim to involve patients in shaping NHS services, and, on the other hand, patients are turning round and saying ‘thanks, but no thanks’.
So what can be done? Well, it seems obvious, but the coalition government needs to make the reforms feel less scary to patients. On a practical level they could start by working up an easy to understand patient map, setting out the main avenues for patient involvement across the major health bodies and how they interlink and how concerns are cascaded up and down; they could also provide a definitive menu of ‘options’ for patient involvement with the expected levels of time commitment and desired levels of expertise required.
Instead of the leaving it purely to local HealthWatch, Clinical Commissioning Groups and the other health bodies to haphazardly recruit patients the government could devise a dedicated online recruitment gateway, make better use of the Cabinet Office’s Public Appointments gateway and the new HealthWatch website, and place useful signposting information on the DirectGov website. All of this would help to formalise patient recruitment and make the whole process more transparent.
Dare I say it – there is also the prestige factor that needs to be addressed. How much prestige is currently attached to patient involvement in local health services? Not much. If we want to encourage greater involvement, we are also going to have to address this image gap. An awareness campaign would be helpful.
Another obvious avenue is for the government to start paying for, or directly providing, some dedicated patient training to make them genuinely more equal partners in the co-design of their healthcare. I’ve lost count of the number of times I have spoken to rheumatoid arthritis patients who have attended meetings at local health bodies with the best of intentions, only to walk away afterwards completely deflated – unable to understand what the clinicians are talking about and feeling routinely ignored.
A culture change is definitely required in the way that some (but not all) healthcare professionals engage with patients across the board room and I remain concerned things won’t get better unless the coalition government makes a determined effort to address this patient training deficit and put them on a more equal footing.
At the moment we have the unsatisfactory situation where charities that are already heavily stretched, and with different levels of financial resource, are largely trying to take it upon themselves to train patients to sit on local health bodies, which unsurprisingly is leading to mixed results. We don’t want to abdicate our responsibilities, but surely we could do with a little more help?
The reason why I am piping up about this now is because it is one of themes that has just cropped up again in a new publication that we published today to coincide with World Arthritis Day, called the Rheumatoid Arthritis (RA) Responsibility Deal.
The document contains a series of practical pledges for different audiences – including patients, healthcare professionals, NHS service managers and policymakers – which if people commit to can help to make a real difference to the clinical outcomes for the 690,000 RA patients that live with this chronic autoimmune disease in the UK.
One of the issues raised repeatedly in the nearly 700 consultation responses that informed this document is the desire to see healthcare professionals take more time to listen carefully to the patient’s specific needs and concerns and for NHS service managers to involve patients and the public in service planning, designing and commissioning decisions.
The message couldn’t be clearer: patients want to get involved, but they just need a bit more help.