by Sue Brown, CEO ARMA
We all know that people are waiting too long for a variety of MSK treatment in the NHS. We all know that the NHS is working hard to tackle waiting times with some success. However, the patient’s experience of waiting and the NHS understanding can be very different things. If the NHS is to deal with waiting lists well, then I would argue it needs to understand what waiting means to patients.
The GIRFT rheumatology Further Faster programme invited me to speak about this to their meeting last night. I spoke to them about the findings of the National Voices report on this, published in 2020. Patients’ waits do not begin when the NHS “clock” starts – on referral to a consultant. They begin when the person decides their symptoms merit professional attention.
By the time they appear on the official waiting lists the GIRFT programmes are tackling, they may have been waiting for GP appointments, community MSK appointments, tests and test results. If they have one of the conditions where there are significant delays in diagnosis, they may have been waiting for treatments to improve their symptoms, when they never will because they are on the wrong treatment, waiting for another diagnosis, waiting for their GP to come up with another option, possibly for years. They may have been through cycles of false hope and disappointments. To a patient, this is all waiting. To the NHS this may be a series of waiting times starting and stopping, or not count as waiting at all.
When a person starts receiving treatment, their NHS waiting clock stops. But they are probably still waiting – for the treatment to have some effect, to be better enough to go back to work, to be able to return to activities they’ve had to give up.
Some of this waiting is inevitable, which is why it is so important that people get support while they wait. We know what people want while they wait.
Communication – they want good information about what’s happening, confirmation of the fact their referral has been received, that they are on a list, how long they might have to wait and what to do if their symptoms get worse.
Support – with self-management, pain management, employment and benefits advice. There are lots of ways this can be delivered, including through voluntary sector and patient support organisations.
Part of the Further Faster methodology is “validating” waiting lists. At its basic level this is a check that everyone on the waiting list should still be there. Have they moved away, got better, sought private treatment, should never have been on the list in the first place? That’s what matters to the system. But it could be a chance to address what matters to the person too. A chance to reassure them they are still on the list, update them on wait times and make sure they are accessing all the support they can from social prescribing, patient support organisations and the voluntary sector.
I urge everyone working with people waiting for treatment to think beyond their own organisation. Patient organisations and others have a wealth of support to offer.