7. Submission by Mr Straw, KC

Mr Straw: My Lady, good afternoon. I represent John’s Campaign, the Relatives and Residents Association and the Patients Association. Broadly they act on behalf of service users, relatives and carers in health and care settings and their reach is roughly 100,000 people.

I would first like to look at provisional scope. We respectfully invite the Inquiry to make clear that it will investigate six matters. I anticipate that most of these will be investigated, and that’s the intention, but it’s important that this is made clear in writing at this stage, we submit. So the six matters are as follows.

Firstly, the situation of people who were outside hospital who had healthcare needs, in particular those who were at home or in care. Ms Carey earlier indicated that this issue would be investigated in the care homes module. I hope it helps for me to clarify the issue of concern for my clients and ask the Inquiry to reconsider whether the appropriate module is the care homes module.

So the real issue of concern for us is people who had healthcare needs where those needs weren’t met due to the Covid response, so denial of access to non-Covid healthcare, things like cancer treatment, treatment for life threatening illnesses, due to the restrictions imposed by the Covid response. It does appear to us that this fits better in this module and we would respectfully ask the Inquiry to reconsider that.

The second issue is we submit that it’s important that the Inquiry investigates, in respect of each of the issues within the provisional scope, the impact of the pandemic and responses to it on people, including on service users and others, as well as on institutions. Now, the need to do that is clear from the Inquiry’s terms of reference, but an example of where this previously wasn’t clear is in CTI’s note for the purposes of this hearing at paragraph 33(c). That indicated that the inability to discharge patients would be investigated, and in particular the impact of that inability on hospitals. Ms Carey has clarified this morning that that will also include the impact on patients who are receiving healthcare, and we welcome that, but we press on the Inquiry to really ensure at every level of the issues that are being investigated that it’s the impact on people that will be centre of the Inquiry’s attention.

The third issue is people’s experience of healthcare during the pandemic, not only in terms of clinical treatment but in a more holistic sense. There are issues of serious public concern that don’t solely relate to clinical treatment, and one particular example that my clients are concerned about is the isolation of vulnerable parents from their loved ones and their carers. This often had a severe adverse impact on both the individual patient themselves and also the carers, for example on the patient’s care, which was very much undermined when the essential carers weren’t present, the quality of the remainder of the patient’s life if they are completely isolated from their carers and their family, and indeed the family themselves.

The fourth issue is end-of-life care. We invite the Inquiry to include in the list of issues end-of-life care as a distinct line of inquiry. This is or at least may be defined differently from palliative care. It is a separate care pathway. It raises additional issues of real public concern, for example how end-of-life care was defined, in what circumstances people were moved on to that care pathway, how patients and their families were supported once they are looking down that pathway, and how decisions were made to refuse life-sustaining treatment.

The fifth issue is the exclusion of non-NHS carers, so, in particular, essential or family carers, from healthcare settings. We submit that this is a major issue. The majority of care, including healthcare, is provided by the unpaid sector. The exclusion of these unpaid or non-NHS carers often had a serious impact on the service users’ care, their ability to communicate while in healthcare, and on their quality of life more generally. It also made the work of NHS staff that much more difficult.

The sixth and final issue which we invite the Inquiry to include within its scope is current relevant healthcare policies and systems so far as they are relevant to paragraph 2 of the terms of reference. Paragraph 2 being the requirement to identify lessons that will be learnt.

We submit that it’s necessary to understand the current systems and policies in order for the Inquiry to identify lessons to be learnt. Mr Wagner has already touched upon this, but just to give an example, in order to understand where the changes need to be made in the future, for example, on the policy on preventing contact with family or essential carers, it’s necessary for the Inquiry to understand what the position is now, otherwise it may not be clear whether or not changes need to be made.

So at least for that purpose we invite the Inquiry to include the current situation within its scope.

So in summary we invite the Inquiry to confirm in writing that the issues that I’ve gone through will be investigated, either in another module or, if it forms part of this module, then they should be identified within the list of issues.

The reasons it is important that that is clearing in writing I’m sure are obvious but, just to put it briefly, the decisions about which documents will be obtained, which questions will be asked of witnesses and even, perhaps, the results of the Listening Exercise may be informed by the written list of issues.

Evidence gathering. A number of CPs have invited the Inquiry to disclose Rule 9 letters. If that’s not going to be done – we support that submission but, in the alternative, if that’s not going to be done, then we would ask the Inquiry at least to consider on a case-by-case basis whether to disclose those letters. I’ve seen a number of occasions when it’s not possible to understand the contents of the witness statement unless one sees the letter of questions that – the Rule 9 letter. For example, witness statements might say, “My response to question 6 is no”. So we would ask the Inquiry at least to consider that on a case-by-case basis.

The Listening Exercise. We look forward to reading the newsletter and listening to the webinar that, my Lady, you mentioned earlier, but within that we invite the Inquiry to give further information on two issues.

Firstly, how will the individual responses feed in to the relevant module? Many people we have contact with are discouraged from being involved in the Listening Exercise because they are not convinced there’s any point to being involved at this stage. Three practical suggestions we have for what further detail may be given to people as to how the outcome of that exercise may inform the rest of the Inquiry are as follows.

Firstly, although it’s going to be anonymised, can summaries of individual cases or quotes from individual cases find their way into reports? Secondly, can a qualitative analysis of responses be done in respect of particular themes? It may be that those themes come from the list of issues in each of the relevant modules or it may be that those themes will develop as time goes on.

A couple of examples of things which may be relevant in this module are as follows: isolation of loved ones from carers in the healthcare context; the types of problems that that leads to, and what lessons may be learned.

The third suggestion we have for the Listening Exercise is a statistical exercise. There may be problems doing that in a number of contexts but, in respect of topics such as discrimination, it may be that the data that comes back from the Listening Exercise can properly inform a statistical analysis.

The second area in respect of the Listening Exercise which we invite further information from the Inquiry on is how the Inquiry will involve those who have difficulties communicating in the exercise. We reiterate Long Covid groups’ submissions on this. My clients and a number of other Core Participants are in a good position to try to help the Inquiry with the best way to try to involve those individuals, and so we very much welcome consultation with our clients as to how that’s best done.

The final issue I would like to address is the point about an interim report. CVF invited the Inquiry earlier to produce an interim report and we would reiterate that invitation. We agree that there’s a pressing need for an interim report in respect of certain topics. In addition to that one that was mentioned by Mr Wagner, a number of people in the healthcare context are still subject to very serious restrictions on their contact with family members with carers and so on, with the serious adverse impact that I’ve mentioned already.

Interim recommendations will be of real value to improving the very difficult current circumstances that those people face.

Unless there’s anything else I can assist you on, those are my submissions.

Lady Hallett: No, thank you very much indeed, Mr Straw. Many of the points you made were made to me during the consultation exercise and I see considerable validity in them – things like the end-of-life care – and there were some very distressing accounts that I heard in the consultation exercise. So I shall try to ensure that we make explicit, if it is not already explicit, that these matters will be investigated.

Thank you for your help.