Donation and transplantation: plan 2021 to 2026

Priority Five – Transplant Recipient Support and Aftercare

Patients often continue to need significant physical and mental health support after they have been discharged from hospital post-transplant. It is important to ensure services are as joined up as possible to enable patients to receive any follow-up care they need and, where possible, to receive this closer to home.

5.1 Work will be taken forward with transplant units and their patients to consider whether existing aftercare services need to be improved for recipients of some or all organs to ensure appropriate support across Scotland. Transplant units provide a range of physical and psychological support to patients before and shortly after their transplant, along with check-ups where needed and emergency support for patients experiencing very severe health problems as a result of their transplant. We will consider with transplant units how they can continue to ensure good communication with and advice and support is provided consistently to patients both pre- and post-transplant, both directly, but also by ensuring patients are aware of other organisations, such as peer-support groups and charities who can help. However, transplant units cannot provide all the healthcare a patient may need over the longer term after their transplant and patients normally need to access most follow-up support relating to side effects or complications, as well as any mental health support they need, via their local NHS Board.

This more local care can reduce the need for patient travel and avoids overloading transplant unit staff unnecessarily, but we need to make sure the relevant staff in NHS Boards' specialist teams and GPs have the right information and support to be able in turn to support transplant recipients. We know from feedback that some patients have raised concerns that communication and joint working between transplant units, NHS Boards' referring clinicians and GPs is not always ideal and this can sometimes lead to delays or confusion for patients. While Renal Units will already have a lot of experience of supporting patients who have had a kidney transplant, for other organs some medical staff in NHS Boards may have less experience of supporting recipients and of the types of side effects or complications they may suffer.

As a result, we plan to work with transplant units and NHS Boards to encourage and support transplant units to develop an improved, more patient-centred 'hub and spoke' model of care to provide better continuity of care for patients. We want to encourage NHS Boards to nominate transplant champions in their Board area. The hub and spoke approach may include offering telemedicine appointments or online advice to support patients to avoid them needing to travel (the lessons learned on this from the coronavirus pandemic can hopefully be transferred to longer term practice). It could also include providing more advice by phone to NHS Board medical staff on appropriate treatment for patients in cases where a patient's local Board feels they cannot support a patient appropriately without advice from their transplant unit. Over time, this should also help increase expertise within Boards and help ensure patients receive joined up and consistent support. Technology, such as apps, may in future also offer other potential means of helping monitor patients' health remotely and ensuring they are appropriately supported.

We also propose to review with the units whether more online guidance should be available to general practitioners or relevant hospital staff to increase awareness and expertise in caring for patients who have had particular transplants (particularly less common ones). Linked to the aims of priority seven on health improvement, we will consider whether this additional guidance should also include aspects such as diet and physical activity to help support transplant patients to keep their donated organ(s) in good condition; patients already receive some guidance on this, but additional ongoing support and advice may be helpful.

Many recipients also need psychological, counselling or other mental health support for a range of reasons, such as due to worry about how long the organ will last, the side effects of immunosuppressant medication or anxieties linked to survivor guilt and thinking about their donor and their family. While support is already provided by transplant units in the period pre- and shortly after the transplant, as part of our Mental Health Strategy^[6], the Scottish Government is committed to continuing to increase the availability of and reducing waiting times for general mental health support from NHS Boards for both adults and children. Although COVID-19 has increased demands on mental health services, we will continue to work with NHS Boards to improve access. This will include making online support available for those patients for whom it is appropriate, which should help reduce waiting times for those patients.

Finally, the Scottish Government will continue to work with NHS Boards to explore options for improving access to electronic records of patients from other NHS Boards. The Electronic Patient Record (EPR) is expected to be delivered as part of the National Digital Platform (NDP) as a key component of Scotland's Digital Health & Care Strategy^[7]. This is likely to take a few years to roll out, but will ensure up to date digital information can be shared securely across NHS Boards.