"We cannot afford to let them down" The Health & Social Care Select Committee publishes their report

"Clearing the backlog caused by the pandemic"

LongCovidSOS were asked to submit written evidence to this inquiry (see this post) and also appeared in front of Rt Hon Jeremy Hunt MP and the committee in person and via video link.

You can read a transcript of the session here and the transcript of a wide ranging interview with 'Participant A' here

The committee concludes:

"There are issues with the capacity of secondary care long covid support clinics; workforce availability; services for children with long covid; understanding of long covid in primary care; and consistency of access to gold-standard services across the country. We recommend clear incentives for ICBs [Integrated Care Boards] to deliver innovative, integrated care, and that they are held accountable for doing so"

The report devotes several sections to the pressing issue of providing care to people with Long Covid, reproduced below

55. As of 31 October 2021, the Office for National Statistics estimated that around 1.2 million people living in private households in the UK (1.9 per cent of the population) were experiencing self-reported “long covid” (symptoms persisting for more than four weeks after the first suspected covid-19 infection that were not explained by something else).103 This was consistent with the figure for 2 October 2021, and an increase from 1.1 million in September 2021, reflecting sustained increased covid-19 infection rates in August. There are issues with the capacity of secondary care long covid support clinics; workforce availability; services for children with long covid; understanding of long covid in primary care; and consistency of access to gold-standard services across the country.

56. NHS England recently published data showing that, between 30 August 2021 and 26 September 2021, 5,821 referrals were made to a post-covid assessment service in England. 5,182 of these were accepted, with 639 “clinically inappropriate.” In the same period, there were 4,168 initial specialist appointments and 6,212 follow-up appointments in post-covid assessment services.104 According to LongCovidSOS, long covid patients represent a “huge unmet need”, although “quantifying it is challenging.”105

57. LongCovidSOS would consider “a one-stop shop with a mix of specialties, professionals allied to healthcare and, importantly, a point of contact for the patient” to be “the benchmark” for long covid care. They stress that “interventions should be appropriate for the highly diverse needs of those suffering from this condition and should not put patients at risk.”106 However, their written submission describes a “postcode-lottery” of adherence to NHS England pathways, inappropriate referrals, lack of diagnostic tools, and “huge numbers” of people waiting many months for access to clinics—an experience which has been described as “traumatic” and can lead to a deterioration in patients’ health. Even after gaining access to a long covid assessment service, navigating the system can be “profoundly bewildering.”107

58. People living with long covid told us about the massive and ongoing impact it had on their fitness, independence, and ability to work.108 At the same time, they had faced a battle to access diagnosis and the right treatment, “fighting” for referrals, with health professionals denying that appropriate long covid services existed.109 Lere Fisher told us that he felt he had experienced “gaslighting.”110 Helen Lunt Davies described repeated calls to her doctor’s surgery, which left her “crying” on the phone.111 For her, the “to-ing and fro-ing between me and my GP” was “probably one of the hardest things, above being ill.”112 However, when she finally did access appropriate post-covid care, it was “brilliant.”113 Ondine Sherwood of support group LongCovidSOS told us that her organisation was still hearing about people “really struggling to get referred.”114

59. We heard about insufficiently integrated responses to long covid as a multisystem disease, with one patient telling us about the “catastrophe” they experienced when “well-meaning people in the local authority long covid clinic had only limited authority to refer me to, or liaise with, specialist services” and “the hub in my case seemed to be the GP and they’re already completely overloaded, so that doesn’t work.”115 However, we also heard that England, had been “a bit of a frontrunner” in “defining pathways, operational standards, clinical standards and treatment approaches.”116 Dr Melissa Heightman, Clinical Lead, Post-covid Assessment Service, University College London Hospitals NHS Foundation Trust, told us that in her area, stakeholders had worked together on a pathway that ensured GPs had a standardised process to follow on receipt of a patient’s positive covid test.

60. The response to long covid shows both the kind of integrated, patient-centred care the NHS can provide when systems work effectively, and the frustration and detriment experienced by patients who have to “fight” to access to the right care when systems do not work effectively. We heard that long covid provided an opportunity to develop truly integrated services, and that care—although variable—was excellent in the best centres. We welcome NHS England’s commitment to provide effective long covid services. However, during our inquiry we heard heart-rending testimony from people who had struggled to access the care they needed, and who did not feel believed or cared for. This is simply not acceptable. We note that NHS England’s current plan for long covid extends to 2022. With covid-19 set to become endemic, NHS England must ensure that its plans to tackle long covid continue. We understand that knowledge of covid-19 and long covid is constantly evolving, and that plans will therefore need to adapt over time, but we are likely to see increasing numbers of people living with this condition. We cannot afford to let them down.

61. We therefore recommend that NHS England publishes, before the end of this financial year, a long covid plan covering the period until 2023. The plan must be developed in consultation with a wide range of stakeholders, including patient groups. NHS England should integrate this into its wider health and care recovery plan, as long covid is likely to have implications for demand and workforce across a range of services.

You can read the government's response to the report here