Homecare medicines services: an opportunity lost Contents

Chapter 3: Transparency

The scale of the problem: competing views

34.Will Quince MP, the Minister for Health and Secondary Care, noted that “the evidence presented to the Committee is conflicting and mixed”.76 The evidence on the scale of the problems in homecare medicines services fell into two categories. Patient groups and clinical representatives told us that the problems with homecare were extensive and long-lasting.77 By contrast, providers, regulators and industry bodies, while they recognised that on occasion there had been problems, told us that these problems were small in scale. Claire Bryce-Smith, Director of Insight, Intelligence and Inspection at the General Pharmaceutical Council, said that “from our perspective, it is a model that is performing quite well overall”.78

35.Alison Davis, Chair of the National Clinical Homecare Association, noted this “disparity between the reports of the patient groups and medical societies and those of homecare providers and their regulators.”79 Claire Bryce-Smith found it “perplexing”.80

Table 2: Quotes illustrating competing views

Subject

Providers and oversight bodies

Patient groups and clinical representatives

Control over health outcomes

“We empower our patients to have better control of their health through knowledge, choice, convenience, and connection”.81

Delays have “resulted in flares and less well controlled disease amongst those patients affected, increased anxiety, and an increased use of steroids”.82

Performance of the sector

“It is a model that is performing quite well overall. There are only a few that have not performed well.”83

“There are deep, systemic and long-standing failures in homecare medicines services, which go beyond issues experienced by just one provider.”84

Urgency of medicines

“These patients are not acute patients. They are chronic patients.”85

Relapses caused by running out of medicine “can have a profound and devastating impact on all aspects of a person’s life”.86

Patient safety

“Fundamentally, it is my view that homecare medicines services are safe, and they are valued by patients.”87

“As a doctor [and patient] and with family to help advocate on my behalf, if I have struggled to navigate the system over the last year, I imagine many other patients have experienced similar frustrations and likely come to harm”.88

36.We considered whether, as several witnesses suggested, the disparity might reflect a high number of people receiving healthcare—a small percentage of a sizeable cohort of patients would represent a lot of people but would not necessarily indicate a systemic failure of the industry as a whole.89 Evidence from the industry body, the National Clinical Homecare Association, demonstrates that in 2020 there were 58,640 patient safety incidents,90 representing 13.7% of active patients. This had fallen by 2022, to 6.8% still a substantial percentage. It is fair to note that ‘patient safety incident’ encompasses a broad range of events, such as the administration of incorrect medicine, safeguarding issues, or aggressive behaviour towards clinical staff. A patient safety incident does not necessarily indicate fault on the part of any single actor.91

37.We were told that, for the four largest homecare providers, satisfaction surveys had shown between 86% and 99% of respondents rated the overall experience as “good” or “very good”.92 Contrasting with that is the evidence of patient groups such as the Cystic Fibrosis Trust, who told us that 87% of respondents to a survey experienced problems with the home delivery of medicines.93

38.Some of the data we were provided with was described as “cherry picked”.94 The National Clinical Homecare Association, the trade body for homecare providers, told us: “in 2022, 98.8% of deliveries were delivered on the day they were intended to be delivered on.”95 The 98.8% figure seemed to be “phenomenally good”.96 However, it reflects success against the date that the homecare provider planned to deliver the medicines. It does not reflect the day that the prescribing clinician had intended the patient to take the medication.97 The date the provider intends to deliver the medicines would be set at a late stage in the process, so success against this date does not reflect any time taken for the prescription to leave a hospital pharmacy; nor any time before it is processed by the homecare provider. This was described to us as a “vitally important distinction”.98 Delays and failures can happen before the provider appoints a day for delivery so this statistic is only a small part of the picture, and provides a false impression of the performance of homecare services.

39.There is an irreconcilable gulf between the views of clinicians and service users, and that of the leadership and governance bodies in the homecare sector on how well it is performing. While this is a complicated system with multiple variables, we are persuaded by the weight of evidence from service users that there are real and serious problems in the sector.

Performance data

40.Performance data would provide answers on the extent of any problems with homecare. Such data is collected. There are 27 key performance indicators (KPIs) developed by the National Homecare Medicines Committee and published by the Royal Pharmaceutical Society. These include the number of failed deliveries (broken down into various categories), delayed clinical services, formal complaints or incidents opened, and adverse drug event incidents.99 Homecare providers collect this information every month and report it to the NHS.

41.However, the performance data is not published by the NHS. This inhibits public scrutiny and makes it “difficult to get a clear picture of the reliability and safety of services provided”.100

42.The data is not proactively made available to the clinicians who arrange homecare for patients. This could prevent clinicians from making informed choices when discussing the option of homecare with patients: “You cannot look and see that one company delivers on its performance a lot better than the others.”101

43.The effect of poor performance on patients is unknown. Some may be slightly inconvenienced, whereas others may become unwell, even requiring surgery. It is possible that some may die. Neither the Government nor the regulators could provide data on how far patients suffered harm as a result of any failures in homecare.102 Joe Bassett, Chair of the National Homecare Medicines Committee, explained that it was possible for the parties who have access to the data to capture some information on harms, but this would require analysis.103

44.No one—not the Government, not NHS England, not patient groups, not regulators, knows how often, nor how seriously patients suffer harm from service failures in homecare. This indicates a significant failure of oversight and hinders the ability of NHS England to ensure patient safety.

45.NHS England must identify how many patients have become unwell or have been harmed because of a failure in homecare services. They should ensure that this information is published and shared with relevant parties. It should also form part of the ministerial statements we have requested by December 2023 and March 2024.

46.In both manufacturer-funded and NHS-funded homecare arrangements the key forum for monitoring performance is regular meetings between the NHS trust and the provider. This, the providers body told us, allowed the NHS to monitor performance against a service level agreement.104

47.In addition to NHS staff, Marketing Authorisation Holders have responsibilities for ensuring the quality of services. The Association of the British Pharmaceutical Industry, who represent manufacturers, told us that their organisation, “manage[s] and fund[s] homecare service contract with HcP (the homecare provider)”, and that this includes “monitoring of KPIs, as contracted”.105

48.It is unclear whether this means monitoring KPIs as set nationally and which apply to the relationship between the NHS and the provider, or separate KPIs contracted between the manufacturer and the provider. KPIs between manufacturers and providers have no standard template and can differ substantially based on the contractual arrangements. Sciensus, a large provider, explained the different sets of performance indicators:

“For a single medicine service there will be the standard … KPIs that have to be reported to the NHMC [National Homecare Medicines Committee]. There will also be a set of KPIs required by the Market Authorisation Holder/pharma company if they are funding the service. Although there will be similarities, each pharma company may require different KPIs.”106

49.In manufacturer-funded homecare, NHS trusts do not have sight of the contracts, the KPIs they set out or performance data against them. Sciensus described this as a challenge for homecare services and called for a “more robust programme of standardisation and an agreed set of core KPIs that can then be aggregated and published for benchmarking.”107

50.Similarly, while there is a national set of KPIs for which the criteria are published, performance against these indicators is not available to Marketing Authorisation Holders. The manufacturers know what these KPIs are but do not see the performance data against them though, as mentioned in chapter 4, they would wish to.108

51.Sarah Campbell, Chief Executive at the British Society for Rheumatology, noted a substantial divergence in performance indicators: “different people are being held to different standards, measures and indicators … they are not singing from the same hymn sheet.”109

52.Different sets of performance data are available to manufacturers and the NHS. This creates confusion and prevents effective monitoring.

53.NHS England must develop and implement one consistent set of performance metrics.

Publication

54.In evidence to our inquiry NHS England representatives announced that they would review the data points collected.110 We later heard that this may include a greater focus on patient experience.111 The national collation would then be published.112 Publication of performance against these KPIs would follow, by April 2024.113

55.Joe Bassett told us that there would be “consideration of specific details of the published report” and gave some examples of what they would consider publishing, including “frequency, granularity, validation methodology”.114 In evidence given subsequently, the Chief Pharmaceutical Officer for England David Webb told us that “it is on those new KPIs that we will attempt to publish the national collation”.115 Consultation on these new KPIs began in September 2023.116

56.At present, the data on performance against key performance indicators is self-reported. As the British Society for Rheumatology drew to our attention, it is not independently verified.117

57.Publication of performance data and greater inclusion of patient perspectives in that data are welcome. However, there is a risk that the performance data could be published in such a diluted form that it becomes meaningless. How frequently the data is published, how detailed it is and whether the data is validated will matter hugely.

58.The Chief Pharmaceutical Officer for England should ensure that the KPI data is published in a consistent, standardised form which is sufficiently specific and regular to ensure meaningful public scrutiny.


76 Q 55 (Will Quince MP)

77 See for example written evidence from Crohn’s & Colitis UK (HMS0004).

78 Q 25 (Claire Bryce-Smith)

79 Supplementary written evidence from National Clinical Homecare Association (HMS0012)

80 Q 37 (Claire Bryce-Smith)

81 Written evidence from Sciensus Pharma Services (HMS0006)

82 Written evidence from British Society for Rheumatology (HMS0001)

83 Q 25 (Claire Bryce-Smith)

84 Written evidence from Crohn’s & Colitis UK (HMS0004)

85 Q 27 (Sarah Billington)

86 Written evidence from Crohn’s & Colitis UK (HMS0004)

87 Q 39 (Joe Bassett)

88 Written evidence from Olivia Goldberg (HMS0024)

89 Q 36 (Sarah Billington), written supplementary evidence from National Clinical Homecare Association (HMS0012)

90 A patient safety incident is defined by the NHS as “any unintended or unexpected incident which could have, or did, lead to harm for one or more patients receiving healthcare.” NHS England, Report a patient safety incident: https://www.england.nhs.uk/patient-safety/report-patient-safety-incident/ [accessed 11 October 2023]

91 NHS England, Report a patient safety incident: https://www.england.nhs.uk/patient-safety/report-patient-safety-incident/ [accessed 24 October 2023]. See also written evidence from the National Clinical Homecare Association (HMS0012)

92 Q 39 (Joe Bassett). These had a sample size of 23,000 patients.

93 Written evidence from Cystic Fibrosis Trust (HMS0003)

94 Supplementary written evidence from British Society for Rheumatology (HMS0010)

95 Q 20 (Alison Davis)

96 Q 23 (Dr Rick Greville)

97 Supplementary written evidence from National Clinical Homecare Association (HMS0012)

98 Supplementary written evidence from British Society for Rheumatology (HMS0010)

99 NHS England, Homecare Medicines and Services Key Performance Indicators: https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.rpharms.com%2FPortals%2F0%2FRPS%2520document%2520library%2FOpen%2520access%2FV6.2%2520-%2520Homecare%2520Medicines%2520and%2520Services%2520KPIs_final%2520for%2520RPS.xlsx [accessed 11 October 2023] The Department for Health and Social Care have clarified that there are 27 KPIs. Several pieces of evidence refer to 61 KPIs. This arises from a misunderstanding of the spreadsheet: there were previously 61 rows in the relevant tab in the spreadsheet (‘KPI definition’), of which 34 were data definition entries.

100 Written evidence from British Society for Rheumatology (HMS0001)

101 Q 4 (Dr Christian Selinger)

102 Written Answer HL9574, Session 2022–23 and Q 26 (Sarah Billington, Claire Bryce-Smith)

103 Q 43 (Joe Bassett)

104 Supplementary written evidence from National Clinical Homecare Association (HMS0012)

105 Supplementary written evidence from Association of the British Pharmaceutical Industry (HMS0009)

106 Supplementary written evidence from Sciensus Pharma Services (HMS0017)

107 Written evidence from Sciensus Pharma Services(HMS0006)

108 Q 17 (Dr Rick Greville)

109 Q 10 (Sarah Campbell)

111 QQ 53, 55 (David Webb)

113 Supplementary written evidence from Claire Foreman and David Webb (HMS0015)

114 Supplementary written evidence from National Homecare Medicines Committee (HMS0014)

115 Q 53 (David Webb)

116 QQ 53, 55 (David Webb)

117 Written evidence from British Society for Rheumatology (HMS0001) and (HMS0010)




© Parliamentary copyright 2023