Chamber and committees

Good morning to the witnesses. I have been listening with great interest to what they have said.

I have a big beef about how we collect and utilise health data and how we deploy that in an information technology system that is not fit for purpose. I used to say that long before the arrival of long Covid. It worries me that, in the NHS system, which is under great pressure—it was under pressure before Covid and is under greater pressure now—access to health services varies greatly across the country. That being the case, how can we be sure that the data that we gather reflects what is really happening in the system? If people cannot see a GP or get to secondary services, or if the GP cannot find a way to refer, how can we be sure that the data that we collect around Covid—and, therefore, how we treat Covid—is accurate? I come first to Jane-Claire Judson.

I will stop there.

Dr Shackles, can you broaden that out from a GP perspective? As a member of the Health and Sport Committee in the last parliamentary session, I remember that nearly everyone who came before us said, “We need our GPs to learn about this condition,” or “Education is needed on that condition.” It seems to me that long Covid is just being added to the list of things that we are asking our GPs to learn about, and you have already alluded to the fact that, at the moment, learning time is not being given to them for that.

I have to say that I take issue with the suggestion that the committee has not taken evidence from long Covid sufferers; I think that we have done so, and a consistent message that has come out is that a lot of long Covid sufferers have had to pay for private treatment, because they have been unable to access NHS services in order to get a long Covid diagnosis. How can your members gather this data if, first and foremost, they are struggling to access the education that would allow them to make such a diagnosis?

Finally, I want to expand this discussion with a question for Dr Taylor. You have gathered data and information from around the world, Dr Taylor, but it concerns me that you, personally, have taken it upon yourself to do that. Is there even a system in the NHS that can share data across health boards, let alone gather data from around the world? Interestingly enough, I read in an article that Australia is having exactly the same problems as we are with data not being shared enough. What is the solution?

Good morning. Thank you for being here—it is a really interesting evidence session. Those who have been here this morning will know that I have an interest in health data. We are actually very good at collecting data, but, funnily enough, we are not very good at deploying it.

I will speak to a point that Heather Cameron made at the start about the number of symptoms that can be involved in the diagnosis of long Covid. If a GP has to refer someone, they can refer them for an electrocardiogram for chest pain, or an MRI for abdominal pain. They can do blood tests for fatigue and brain fog. Without question, with something like Covid, there will be a mental health element to consider. I am interested to hear what you have to say about that, Ms Thomson. All that is just to get to a long Covid diagnosis as it is a condition of elimination as far as I can see.

We are putting a really resource-intensive request on to a system that is already under pressure. We heard from those with long Covid that they ended up having to go private to get their diagnosis. We also heard this morning about the pressure on the time of GPs and their capacity to learn and share their learning and experience.

That is a long-winded way of me getting back to the question of whether we have a data system or information technology system that is fit for purpose and that allows input from and output for our NHS professionals, and possible integration with the third sector. Having been on this issue for a long time, I do not think that we do, but I would be interested to hear whether that is the correct direction of travel to a long-term solution. I will go to Heather Cameron first.

I will come to you next, Ms Thomson.

Just to add to that, the concern is that, if we cannot go across an NHS border and transfer data from one NHS system to another during a global pandemic, which we have global data on, how can we expect to integrate internationally to help us to develop a strategy to tackle long Covid?

I know that I am against the clock here, convener, but my question is about the challenge that GPs face. They want to know about long Covid, but they do not have the time to know about it and they do not have access to the information that they need. How can we join up the dots to ensure they use their time in the best way?

The health service is under such stress at the moment. We are aware of the waiting time for an MRI scan, for example. A long Covid sufferer might join that waiting list, and they might then join the waiting list for an ECG and for something else. The reality is that getting an early diagnosis of long Covid will be extraordinarily difficult under the circumstances that the NHS currently finds itself in. I am just putting that out there.

Good morning. I thank the witnesses for giving us their time.

I was going to look at current long Covid services and ask about your experience of accessing specialist care but, from the responses that we have had today, I conclude that we still have some way to go.

I want to put a couple of things on the table. First, are we collecting and utilising data? Secondly, we need to understand from the people who have gone through this journey what specialist care and assessments would look like. What do we need to build?

What I am hearing is the suggestion that, “If we don’t look, there won’t be a problem.”

I want to tie up the issues that were raised in response to questions from my colleague John Mason with what Stuart McIver said about assessments and the ability to diagnose long Covid. You described how, after going private, a long Covid diagnosis was reached by a process of elimination, using ECGs, MRIs and blood tests. The issue is that that is an intensive process for NHS staff to carry out. As my colleague John Mason said, that would be a huge amount of resource to allocate and potentially take away from other areas of the NHS. How do we deal with that?