Chapter 2: The problem
Patient experience
19.We launched this inquiry because patient groups told us that many patients experienced problems with homecare services. Crohn’s & Colitis UK reported “deep, systemic and long-standing failures in homecare medicine services”.25 Respondents to a survey run by the Cystic Fibrosis Trust had “overwhelmingly negative experiences”, with 87% experiencing problems with the home delivery of their medicines.26
20.The key problem was delays in receiving treatment. In their inspections of homecare services, the Care Quality Commission (CQC) identified mis-delivery and delays to treatment as recurring themes.27 This is borne out by a May 2021 report into one homecare provider in which the CQC found that there had been 9,885 patients whose medicines were missed or delayed between October and December 2020. Some had suffered “avoidable harm”.28 The Scottish Government Pharmacy and Medicines Division on Homecare Medicines Services, currently leading a review of homecare in Scotland, (a separate but similar system), stated that service issues “have led to some patients missing doses, [and] led to delays in treatment initiation.”29
21.We received numerous reports of delays, including from the British Society for Rheumatology,30 the Chief Pharmaceutical Officer,31 the British Association of Dermatologists,32 Crohn’s & Colitis UK,33 Sciensus Pharma Services (a large provider),34 and the Parliamentary and Health Service Ombudsman.35
Box 1: Experiences of delays (reported between 2022 and 2023)
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“In June 2022 the initial [homecare worker sent] to teach how to correctly administer the medication, did not come as rearranged. I was also assured another nurse would come two weeks later to check the technique; this never occurred.”36 “The majority of medications do not turn up on the date and time told.”37 “They messed me around so much I nearly missed a few doses as they just didn’t turn up when a delivery was scheduled … Items are regularly missed from my order e.g., syringes and I have to email to ensure it’s included. Sometimes it is but usually it’s not, so I have to purchase my own from Amazon.”38 “I no longer expect my medicines to turn up when they say it will”.39 |
22.Dr Christian Selinger reported: “it frequently takes six to eight weeks, sometimes longer, between setting up the initial contact with the homecare company and a delivery happening”.40 Most agreements require ten days between receipt of prescription and delivery of medicines,41 six to eight weeks is a significantly greater period. Dr Selinger described it as “an unacceptably long delay”.42
23.We also heard reports of:
- Providers delivering the wrong, faulty, or outdated medicines or devices.43
- Routine or repeat prescriptions not being received by patients, with no acknowledgement from the provider that this would happen.44
- Prescriptions being received by providers and then lost.45
- A lack of flexibility for the patient in when they might receive their medicine and challenges organising deliveries, including where call handlers did not understand how to organise deliveries.46
- Difficulties in speaking to the provider. We were told that patients “cannot get hold of anyone … it is absolutely impossible to get through”.47
Effect on patients
24.We were told that delays in receiving the correct medicine or care can have “real consequences for the patient”48 and “can permanently affect a patient’s quality of life”.49 For certain conditions, an interruption in medication “usually leads to the symptoms flaring up and being not well controlled”.50 We heard of patients developing problems including irreparable joint damage,51 skin and eye problems, diarrhoea, abdominal pain, strictures, fatigue, and blood or mucus in stools.52
25.A delay in medication can mean that short-term medical interventions are required. These can, depending on the condition and treatment, come with side effects including osteoporosis and psychosis.53 Dr Christian Selinger described one treatment used in this way as “an effective but very toxic treatment that does not help in the long term … a fire extinguisher, but one that is very toxic, so we try to avoid them.”54
26.Delays in receiving medicines can lead to conditions deteriorating. Of respondents to a Crohn’s & Colitis UK survey who had experienced failures in homecare medicines delivery, 12% stated they attended A&E as a result and 5% required surgery.55
27.We heard that delays can render some drugs ineffective and mean that a new treatment is required to manage the condition.56 For some conditions there are limits on the number of therapies available so patients could run out of possible treatments due to repeated delays in drug delivery.57
Box 2: Quotes illustrating the detrimental impact of poor service (reported in 2023)
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“I am regularly going without vital medicines”.58 “Missed doses of medicine makes me have several weeks feeling much more poorly”.59 “I’ve had to stay in hospital longer”.60 “It makes me mad, frustrated, but mostly it’s heartbreaking seeing my child suffering—and feeling helpless. [Homecare provider] has added so much unnecessary stress to our lives, when we were already struggling with accepting our daughter’s diagnosis.”61 |
28.We were told that delays and uncertainty can be very worrying and affect the quality of life of those using services. The British Society for Rheumatology told us that patients can experience anxiety and poorer well-being, and require time off from work.62 Difficulties arranging deliveries can mean that people need to cancel social or leisure activities.63 One respondent to the survey conducted by the Cystic Fibrosis Trust noted: “It’s terrible … the times are a nightmare and missed deliveries can take ages to rearrange … it’s a horrible system”. Another reported that “it is a massive burden and on top of everything else we need to do and have to deal with”.64
Impact on the NHS
29.Patients who have not received their homecare services often contact their hospital or the clinicians who referred them to the service. This has a detrimental impact on NHS resources. We were told of clinical teams having to spend “hours and hours”65 following up prescriptions and arranging to teach self-administration of care (for example, how to inject a drug). Crohn’s & Colitis UK described the amount of time spent by clinical teams liaising with homecare companies as “completely unacceptable”.66 It estimates that 10% of specialist Crohn’s and colitis nurses spend a day per week working on issues related to homecare services.67 The British Society for Rheumatology told us that one clinician they are in contact with spent up to a quarter of their time on homecare-related issues.68
Box 3: Clinician experience (reported between 2022 and 2023)
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“Huge delays in getting drugs out to patients, they promise it is within 10 working days, but this doesn’t happen. Rheumatology nurses have to start all treatment in hospital now and issue an 8-week supply of medication to prevent flare of disease. Impact on nursing team and prescribing team is immense”.69 “I have lost count of the amount of patients we have had to start on our own hospital pharmacy supplies”.70 “Patients should be supported by [homecare provider] as per service level agreement, but they end up calling our advice lines because nobody answers their calls.”71 |
30.The British Society for Rheumatology reported hospital teams being “forced to take steps to proactively manage issues before they happen.”72 They told us that some hospitals, aware that there were problems, protected patients by issuing treatments, teaching self-administration and arranging their own delivery services. They were clear that “anticipating shortfalls and implementing workarounds is neither best practice nor an optimum use of resources, especially when it comes at additional financial and staff costs to the NHS.”73 Though it is difficult to quantify the cost of these workarounds, activities such as running clinics, or providing advice or assistance via telephone require staff time which could be spent elsewhere. Dr Christian Selinger spoke about an infusion unit in Leeds, which taught patients to self-administer medicine, and provided this analysis:
“We are doing something that the homecare company is paid for but cannot deliver. That has consequences because those specialist nurses are not available to deal with other patients. Similar things happen in other units. Either patients suffer or the NHS does mitigation, which has consequences as well.”74
31.In some cases, a patient may have to be hospitalised because their medicines have been delayed. This is, as Dr Selinger points out, “awful for the patient, but it is also an absolute waste of NHS resources”.75
32.Delays in providing homecare services can negatively impact on patients physical and mental health. For some, impacts can be serious safety issues and include patients being admitted to hospital or requiring surgery.
33.In some cases the failure of provision of homecare medicines is so severe, or so predictable, that NHS services are compelled to use their resources for services which should be delivered by homecare providers. The NHS can pay twice—once for the homecare provider and, when that fails, to provide the service themselves.
28 While this particular volume of problems were found to be the result of a new IT system, an inspection report several months later found that the service still “required improvement” on the key safety measure. See: Care Quality Commission, Healthcare at home—Head office: inspection report (14 May 2021): https://api.cqc.org.uk/public/v1/reports/ab248133-cba7-4563–809a-69199ce412ac?20210514000508 [accessed 12 September 2023]
29 Written evidence from Scottish Government Pharmacy and Medicines Division on Homecare Medicines Services (HMS0008)
39 Ibid.
43 Written evidence from British Association of Dermatologists (HMS0002), Crohn’s & Colitis UK (HMS0004) and British Society for Rheumatology (HMS0001)
44 Q 3 (Dr Christian Selinger), written evidence from Crohn’s & Colitis UK (HMS0004), British Society for Rheumatology (HMS0001) and British Association of Dermatologists (HMS0002)
45 Q 3 (Sarah Campbell), written evidence from British Society for Rheumatology (HMS0001) and Crohn’s & Colitis UK (HMS0004)
56 Q 3 (Dr Christian Selinger), written evidence from Parliamentary and Health Services Ombudsman (HMS0007) and Crohn’s & Colitis UK (HMS0004)
57 See, for example Katherine A Falloon et al, ‘Current Therapy in Inflammatory Bowel Disease: Why and How We Need to Change?’, European Medical Journal, vol. 6, (2022), pp 40–49: https://www.emjreviews.com/innovations/article/current-therapy-in-inflammatory-bowel-disease-why-and-how-we-need-to-change-j080121/ [accessed 26 October 2023]
59 Ibid.
60 Ibid.
69 Ibid.
70 Ibid.
73 Ibid.