8.The past months have inevitably placed a strain on the NHS and care sector which has in turn hindered the delivery of core NHS and care services in meeting patients’ needs. We are impressed by the visible efforts of all those associated with the delivery of healthcare services, from policy makers to front line professionals, to minimise the impact of the pandemic.
9.Throughout the course of the pandemic, the message from Government and NHSE/I has been that “the NHS is open for business”. However, despite this reassuring message, for some, the reality of accessing healthcare services has inevitably been mixed which has caused anxiety and stress.
10.As we set out in our letter to the Secretary of State and Chief Executive of NHSE/I on 21 July, during the pandemic, communication to patients about i) delays, cancellations and access to medical services and ii) important medical guidance (such as that relating to “shielding”) could have been clearer. We have received personal and heartfelt pleas from individuals whose worries have been accentuated by less than helpful communication from both the Department of Health & Social Care and NHSE/I, as well as individual hospitals. Some patients with critical needs have found themselves unable to find out what medical treatment and advice is available, how to access health services safely and whether their appointments will be going ahead or not. Some individuals have also been confused and worried about what precisely the medical guidance means for them with their condition. Further to this, we have also heard that a combination of the public’s perception that the NHS is not functioning normally, plus fears of attending due to risk of catching COVID-19, have added to the difficulties faced by the NHS.
11.The quality of communication with patients about delays and cancellations to their referrals and appointments for critical health services has been variable and this has clearly added to the burden on patients. Some patients—even with life threatening conditions such as cancer—have reported the emotional distress that has resulted from them being unclear as to when their medical appointment will take place. For example, during our inquiry, we heard from Daloni Carlisle, an NHS patient in need of cancer treatment, who told us:
I fell into a hole where I was absolutely in limbo. I did not know, and I had no communication about, when the chemotherapy might start. For most of the lockdown I have been sitting here at home knowing that all the cancers are growing and knowing that the tumours in my lung, my liver and my spine are all busily growing, and there has been absolutely no word at all from the hospital about when some treatment might start.
I am a single mum with teenagers at home. My absolute priority is to stay alive. I cannot tell you how difficult that limbo period has been.
12.Giving evidence at the same session, Rob Martinez, an NHS patient whose urgent joint replacement surgery was cancelled, told us about his experience:
[O]n the NHS side of it, with the hospitals, I think they should be in contact with people, to keep them aware that they have not been forgotten and that things will eventually come back again. They could have given a phone call or an update, but it went completely silent. It is almost like, “Is this going to happen? Isn’t it going to happen?” You were left in the lurch. They could have helped by being in contact with people.
[…] If I had the odd phone call just to say, “Look, we know you are waiting for an operation but you have not been forgotten. This is the latest update,” it would have been nice. It went so silent. I was so close to having [surgery], and then it was cancelled. It was absolutely devastating the day it got cancelled. It is a shame that they did not communicate.
[…] I would have liked to have some updates from the hospital. There was nothing. There was no offer of pain management. There was nothing whatsoever. I had no updates at all until, as I say, I rang them yesterday.
13.Dr Charlotte Augst (Chief Executive, National Voices) told us that the lack of communication to patients about their appointments “can tip people over into deep despair” and that this is “the common thread through all the stories [National Voices] have heard” as part of its project and wider work. Dr Augst explained:
We are currently interviewing people about their experiences of cancellation and delay. We have yet to meet anyone, before or after COVID, who says that they have ever had a referral acknowledged. Your GP refers you and then you do not hear anything. The anxiety of not knowing whether you are actually on a waiting list, whether you will be seen or whether your referral has been lost adds a whole layer of distress to what is already a distressing situation.
14.Sir Robert Francis (Chair, Healthwatch England) similarly told us that “many [patients] feel that they have been left in the lurch […] they get messages that their so called routine treatment has been cancelled or their screening has not happened, and then they are left in a hole. They do not hear anything”. Sir Robert explained:
People need to know why appointments are being cancelled and what is being done about that for them in their circumstances. It is not just an administrative matter of a duplicated letter saying the same thing to everyone. People have the right to be treated as individuals.
15.We have also heard that communication relating to the operation of services more widely has been ineffective at times. Dr Charlotte Augst illustrated how information she had received about a recent medical appointment had been contradictory and inconsistent:
[On the] example of cervical screening, I got the letter; I was overdue and I had to go. I was then told, “We haven’t got any lab capacity.” I got a communication from the NHS saying, “It’s really important; you’ve missed it and you’ve got to go.” Then I was told by my GP, “Even if I did you a smear test, I couldn’t send a sample anywhere because all the labs are doing [COVID-19 related] testing.” We need to get our ducks in a row, and then we need to communicate what the local deal is.
16.We are aware that publication of shielding guidance was of clinical importance, and a medical decision was made as to which individuals do and do not belong in the “clinically extremely vulnerable” category. During our inquiry, however, we were told that some patients were left feeling confused by the information they received, and frustrated by the lack of clarity of what practical changes they would need to take in order to adhere to the shielding guidance. Changes to shielding guidance also did not respond to some patients’ anxiety or remove confusion. This was made clear to us on 16 June 2020, when Daloni Carlisle, who has been required to “shield”, told us:
I am supposed to be shielding. The advice is completely impossible to follow. It is utterly meaningless and has caused an enormous amount of distress. Personally, I read the top line that says that it is up to you whether you follow it. I make my own judgments about my own safety. I feel reasonably confident in doing so, but I know people for whom it has caused extraordinary distress. It is utterly useless. I cannot tell you how galling it has been for people. Something has to be done about that.
Daloni’s experience is not a “one off”. We received a body of written evidence which highlights the difficultly patients have had in understanding shielding guidance and what it means for them.
17.Dr Charlotte Augst told us of her concern that “the shielded” and “organisations that understand shielding” were not involved in drafting the shielding guidance, while Sir Robert Francis told us that the lack of patient involvement was an “overarching theme” and that individuals who are shielding were “not being sufficiently involved in the decisions that are being made about what should happen next”.
18.Sir Robert Francis underlined to us the need for medical staff to have “an actual conversation with patients about what their needs are in the context of the pandemic and what may follow it” and the need for “much more clearer communication” about what medical services are available to patients and how patients can access such services. Dr Charlotte Augst agreed and she told us:
You would not approach communication with the most important actor [patients] anywhere else with a mix of saying, “The NHS is open but don’t waste our time. Fingers crossed.” That seems to me to be the approach we have taken. We are saying, “Do come. Don’t come. Fingers crossed that the right people come.” That is not how we can resolve this.
[…] ideally that communication needs to be led by the clinical team […] we need to get the cardiologist, the endocrinologist, the diabetes nurse and so on to write to the patient and say, “This is how it is going to work around here now. If this happens, this is what you do. If that happens, you’ve got my number. For everything else you go to the GP.” Everyone in that local place must know that that is the deal now.
19.On 30 June 2020, commenting on the oral testimonies of Daloni Carlisle and Rob Martinez, Sir Simon Stevens told us that he thought that there was “a sense that communication on a range of topics has been quite comprehensive”. However, he admitted that “there is a question of communication” and that “Quite clearly, hospital teams have a big job of work to do to connect and communicate properly with patients whose care had to be paused”.
20.In response to our letter of 21 July 2020, Sir Simon Stevens further explained how NHSE/I are improving communication with patients. Sir Simon wrote:
We have asked: “Trusts working with GP practices should ensure that between them every patient whose planned care has been disrupted by COVID receives clear communication about how they will be looked after, and who to contact in the event that their clinical circumstances change.” We have also drawn colleagues’ attention to helpful advice produced by Healthwatch, National Voices, as well as the work of the NHS Assembly.
21.The pandemic has presented an unprecedented challenge to the NHS and the Government. Whilst we have no doubt that often communication to patients was as effective as could reasonably be expected in the context of a pandemic, this was not always the case. As we set out in our letter to Rt Hon Matt Hancock and Sir Simon Stevens on 21 July 2020, the patient experience for some has been unacceptably poor, leaving them feeling like they have been left in “limbo” or “in the lurch”. Unnecessary anxiety and stress has been caused to those patients due to poor communication not just from their local hospital about the scheduling of appointments or access to treatments, but from national bodies, and on key items of guidance such as on shielding. Some sections of the public have been left thinking the NHS is not working on routine non-COVID conditions, this in conjunction with the fear of some patients about going into hospitals where there could be a risk of catching COVID-19, is having a significant impact and needs addressing.
22.Notwithstanding the actions taken to date, we recommend that NHS England & Improvement review, as a matter of priority, the directions given to NHS Trusts about how to communicate with patients about the progress of their treatment and important medical guidance in any future spike or second wave. As part of this review, NHSE/I must ensure that patients are always treated with dignity and compassion. We ask that as part of that review, NHSE/I makes an assessment of its and hospitals’ communication with patients—and provide us with an update by the end of October 2020. We also ask, as part of this review, that NHSE/I address how they will communicate to the general population to ensure that the public gets the message that the NHS is open, and that those who have fears of catching COVID-19 in medical settings are not discouraged from accessing medical treatment.
7 See in particualr paragraphs 25, 46–47 and 103–105 of this Report. Also, see, for example: ; ; ; ; ; Mr Shueb Ansar (Public Affairs Officer at HealthWatch England) (); Rory Murray (Public Affairs Manager at Royal College of Physicians) (); Mr Paul Alexander (Policy Manager at The Royal College of Radiologists and collaborator at The Society and College of Radiographers) (); Dr Katherine Henderson (President at Royal College of Emergency Medicine) (); The Royal College of Pathologists Janine Aldridge (Public Affairs Officer at The Royal College of Pathologists) () and Caitlin Plunkett-Reilly (Public Affairs and Campaigns Lead at Royal College of Paediatrics and Child Health) ().
8 See, for example: ; ; ; ; ; ; National Voices (); Mr Shueb Ansar (Public Affairs Officer at HealthWatch England) (); Rory Murray (Public Affairs Manager at Royal College of Physicians) () and (); Jenny Priest (Director of Policy and Public Affairs at Royal College of Obstetricians and Gynaecologists) (); Ms Janine Aldridge (Public Affairs Officer at The Royal College of Pathologists Cytopathology Sub-Committee) (); Tamora Langley (Head of Policy Media and Public Affairs at Royal College of Surgeons of England) (); Ms Jessica Reeves (Public Affairs and Campaigns Manager at Sands, stillbirth and neonatal death charity) (); Ms Kate Mulley (Director of Research, Education and Policy at Sands - the stillbirth and neonatal death charity) (); Rebecca Brione (Research and Partnerships Officer at Birthrights) ().
20 ; Ms Amelia Chong (Senior Policy and Public Affairs Manager at Anthony Nolan) (); Miss Charlotte Wickens (Policy and Public Affairs Officer at Anthony Nolan) (); National Voices (); Mr Tom Nightingale (Senior Public Affairs Officer at Diabetes UK) (); Christopher Walden (Head of Policy and Campaigns at Blood Cancer UK) (); and Rory Murray (Public Affairs Manager at Royal College of Physicians) () and ().
22 See, for example: National Voices (); National Voices (); Mr Shueb Ansar (Public Affairs Officer at HealthWatch England) (); Jane Lyons (CEO at Cancer52) () and (); Mrs Katie Begg (Secretariat at Blood Cancer Alliance) (); Christopher Walden (Head of Policy and Campaigns at Blood Cancer UK) (); Ms Sally Greenbrook (Policy Manager at British Geriatrics Society) (); Rory Murray (Public Affairs Manager at Royal College of Physicians) (); Ms Samantha Sharp (Senior Policy Officer at Kidney Care UK) (); Fiona Loud (Kidney Care UK at Kidney Care UK) (); Ms Amelia Chong (Senior Policy and Public Affairs Manager at Anthony Nolan) (); Miss Charlotte Wickens (Policy and Public Affairs Officer at Anthony Nolan) (); Ms Josie Anderson (Campaign and Policy Manager at Bliss) (); Rhea Newman (Senior Parliamentary Officer at Mind) (); Laura Cockram (Head of Policy and Campaigns at Parkinson’s UK) (); Mrs LIz Darlison (Head of Charity at Mesothelioma UK) (); Andy Bell (Deputy Chief Executive at Centre for Mental Health) (); Roche Products Ltd Emma Pritchard (Roche Products Ltd at Roche Products Ltd) (); Ms Lynn Mackay-Thomas (Cheif Executive Officer at British Society for Heart Failure) (); Dr Lisa Wilde (Director of Research and External Affairs at Bowel Cancer UK) (); Niall Dickson (Chief Executive at NHS Confederation) (); Ms Rachel Power (Chief Executive at The Patients Association) (); Mr Andy McGuinness (Senior Public Affairs Officer at Macmillan Cancer Support) (); Harjit Sandhu (Managing Director at FODO and Managing Director at NCHA) (); Samuel Lawes (Policy and Communications Manager at National Rheumatoid Arthritis Society) () and Mr Noah Froud (Coordinator at RAIRDA (Rare Autoimmune Rheumatic Disease Alliance)) ().
Published: 1 October 2020