NHS: long-term plans, short-term costs

What a groundbreaking Parkinson's project taught me about change in the NHS

I was in Cardiff visiting the Dementia Research Institute (more on that next week) when the government published its 10 year plan for the NHS. So it was only when I was on the train home that I began to focus on Wes Streeting’s drive to shift care, as the press release puts it, from hospital to community, analogue to digital and sickness to prevention.

After discussions with a collection of brilliant scientists often tackling illnesses so complex that 10 years is just about enough time to get started, the Health Secretary’s vision of a health service transformed in a decade seemed what Sir Humphrey in Yes, Minister would have described as “brave”.

I thought of my involvement over the past couple of years in a scheme which seems to embody exactly what the government wants the future of healthcare to look like. It is called Home Based Care (HBC) and it is a new way of looking after people with Parkinson’s.

The existing system where once a year - or sometimes less frequently - the patient travels to the outpatients department of a big hospital to see a doctor face-to-face whether they need to or not, is “unsustainable and outdated” said the press release unveiling the new project. The language could have come from Wes Streeting’s plan but this was from 2019 when 150 patients in Devon and Cornwall were invited to try. something new.

Home Based Care would see them in constant touch with a. range of healthcare professionals but mainly by phone or video, with in-person appointments arranged if needed. Rather than wait for that annual visit and a walk up and down the corridor outside the doctor’s office to assess any change in their condition they would fill in regular questionnaires. Every few months they would be sent a smartwatch which would record their symptoms and act as a safety net to catch those who did not want to “trouble the doctor” about a problem.

While the project was disrupted, like so many, by the arrival of the pandemic, it seemed to prove popular with the patients enrolled on it. The neurologist in charge of HBC Professor Camille Carroll was given a grant by NHS England to develop the idea, make it far more digital with a sophisticated app replacing paper questionnaires and providing far more information for both doctors and patients. This is where I came in - Professor Carroll invited me to join a Patient Involvement Committee keeping an eye on the progress of the digital project.

Every few months the committee would get an updatr from Camille and her team. Although there were the inevitable delays you expect when a complex piece of software is being developed - something that would be classed as a medical device and have to satisfy the regulator - all seemed to be more or less going to plan.

Then came a bombshell. It seemed that the future of the original HBC project based out of a Plymouth hospital was in doubt. It had originally been funded by service improvement grants from the Health Foundation and Parkinson’s UK but now the money was running out and it seemed various health service bodies when asked to stump up were saying - “what, me?” Key staff with skills vital to the project, particularly in data management, were leaving and not being replaced, at least not by people on the same level. This raised lots of questions about the future of the digital project which would need to learn from the data gathered in Plymouth. The patients had not been informed officially that there was a problem but they may have noticed that the regular shipments of the smartwatches to record their symptoms had come to a halt.

Late last year, I was invited by the members of the Patient Involvement Committee for the original scheme to join them in a couple of meetings with local NHS managers. It was not an encouraging experience - the project seemed to be facing closure at the end of the financial year in April if someone did not pick up the tab but nobody seemed to share the sense of urgency felt by the patient representatives.

To be fair, like most hospitals, they were firefighting huge problems with Accident and Emergency, which may have made them less attentive to this long-term issue.

Somehow, the scheme limped on through the Spring but we were becoing increasingly infuriated about the situation and thinking of making a very public fuss. But then a couple of weeks ago we had a meeting with someone who seemed to know what they were doing. A senior manager had been brought in to have a look at the whole Parkinson’s service in Plymouth Hospitals - most of the roughly 2,000 patients were still on the old scheme.

For the first time, this executive talked of moving HBC on from the pilot stage to something that would become the norm for most patients. He warned that this would not happen in a hurry and would mean working to convince staff who had not been involved in the new form of care that it was a step forward.

We are relieved that the outlook for this pioneering scheme has brightened. But it seems likely that, as the NHS transformation gets underway, there will be many more examples where managers trying to cope with short-term financial crises clash with innovators who insist that investing in the future is the only way to make sure it arrives.