Independent Review of Medicines Homecare in Scotland: review report and recommendations

People at the centre

Central to the Review was understanding the lived and living experience of patients, and their family/carers, who use medicines homecare services. The ALLIANCE [1] was commissioned to undertake this work as part of a patient voice workstream.

The Voice of the Patient workstream was underpinned by the What Matters to You approach and corresponding framework [24]. The approach places the individual at the heart of decision making for their health and care and prompts them to share what is important and what they value within the wider context of their quality of life. What Matters to You has helped us to identify shortfalls that affect patients’ physical and mental health. This contributes towards holistic patient care that takes into account the outcomes that patients want to achieve.

An online survey was developed and targeted engagement undertaken to identify emerging themes. The ALLIANCE ensured that the individuals and groups it engaged with were reflective of the target population, with the inclusion of seldom heard groups, who are recipients of secondary care-initiated medicines, associated care, and homecare.

The ALLIANCE engagement work and ‘Medicines Homecare: what matters to people’ report has given us crucial insights from patients, families and other professions that use medicines homecare services.

We know that for many patients’ homecare services offer an important lifeline which cannot be underestimated.

"Training on how to use the injections at home, information explained well re side effects, adverse reactions etc, explaining reordering process. Injections delivered on time every time reliably. Good communication re delivery slot. Flexibility to choose delivery day. Additional information on my treatment as needed from knowledgeable individuals easily reached e.g., Travelling with my injections. I like being [able] to log in and check my delivery date, make changes etc.”

"No travel costs. Reliable service means I don’t need to remember. Fewer worries.”

"Always punctual, lots of updates, easy to communicate with. Polite & friendly delivery team. Never had to wait for medication once initiated. Prompt replies to any questions.”

"I have found it convenient as I do not have to go to hospital to receive any treatment and administer my medication when it suits me best. Having [homecare] allows me to stay in work.”

Patients, carers and families ranked the importance of the following advantages of homecare:

We have learned from the patient perspective that what matters to them is being heard and that they feel their individual circumstances are taken into account.

"It really needs closer/more regular scrutiny on EVERY company that are providing this service, to ensure that they have the correct system working. It’s a good thing when it’s working, but when a company is failing in its duty, it needs a body to step in FAST and find out why this is and to resolve it quickly. As a patient who relies on having this weekly treatment, it’s distressing when nobody ‘hears’ you - thank goodness my RA Team … were always helpful. But nobody from the company ever apologised or explained why there was such utter chaos.”

"I would like to be able to contact someone from the homecare company directly and have someone who is trained and knowledgeable on the issues that can arise with differing medications and biological treatments. It would be lovely to feel I matter and my ill health matters instead of feeling that I have no say in anything. I wonder if an option for delivery could be at a major dispensing chemist or my own GP practice.”

"They keep pressuring me to use the phone app. I tried it, but it’s impossible – you need your email, password, and a username. If you forget one of them, it’s almost impossible to get onto the app via a reset. If you do use the app, it offers delivery dates which are different to those they text you with, or the available days and times you already informed them of by phone, several times. It is very, very frustrating. On the other hand, I can still phone them and organise delivery.”

The following comments from patients quoted in the ALLIANCE report demonstrate some of the challenges they have faced in accessing medicines homecare services.

"When I first started getting my medication delivered it was by a man in a van, he could take away sharps bins and supply new ones. You knew that the medication had been kept at the correct temperature as the van was refrigerated. I know some people still have their delivery like that but I was moved to a new provider and my deliveries come by post. A huge polystyrene box and 4 freezer packs for a couple of pens! I’m onto yet another supplier and it is still by post in a slightly smaller polystyrene box. These boxes mean I have to go to my local dump to dispose of them, very inconvenient.”

"I found the initial process of getting set up challenging as there was miscommunication between homecare and hospital at first, meaning I waited longer than I should to have started treatment. I had an issue with my second delivery in which it was confirmed and then wasn’t meaning I then had to run out before any was delivered again.”

"I feel that too little information is given to the patient when first beginning a biological drug. This lack of information is a reflection of the challenges facing departments like Rheumatology who have little or no staff. I would like to understand the process of pharmaceutical companies and their relationship with the Homecare company so I can understand how things go so badly wrong for the patient.”

"I was happy that my MSP immediately got involved when I first made contact and this allowed him to understand how many patients were being effected by non-deliveries. I received a detailed report from the Pharmaceutical and Home Care Companies with a full written apology. I managed to raise the issues at a higher level and made the delivery companies accountable for the pain and misery experienced by patients in my local authority.”

Patients, carers and families indicated which of following four challenges with homecare they had experienced.

*Some patients did not experience any and some experienced more than one of the four challenges listed.