Organ transplant aftercare and support in Scotland Transplant patient survey report

4. Communication, education and advice

This section explored patients’ experiences of communication (with their transplant teams, local specialists, and GPs); receiving information about their transplant; and knowing how to get advice.

4.1 Communication

Respondents were asked to retrospectively rate the communication they received from healthcare teams at different stages of their transplant journey, scoring the communication on a scale of poor/below average/average/good/excellent or ‘not applicable’.

They were asked to rate the communication they experienced before their transplant at the following stages:

During the referral process

• with their GP
• with their local referring team

When being assessed

• with the transplant team

When on the waiting list

• with the transplant team
• with the local referring team
• with their GP

They were asked to rate the communication they experienced after their transplant at the following stages

In the first year

• with the transplant team

From the end of the first year until the present day

• with the transplant team
• with the local referring team
• with their GP

The results showed a positive response, with over 75% respondents rating the communication with their transplant team and local referring teams highly (good/excellent) and only a small number (3%) of respondents scoring the communication as poor or below average at each of the five stages.

The responses highlighted that communications between respondents and their GPs were less positive, with around 45% giving a response of good or excellent and around 14% rating communications as poor or below average at the three stages.

4.2 Education

Learning about how to live with a transplant is important and the information can be difficult to understand.

To explore the patients’ experiences, respondents were asked:

Do you feel you received sufficient information/education from your transplant team?

Before their transplant, they were asked to rate the information/education they received:

• During the referral process
• When being assessed
• When on the waiting list

After their transplant, they were asked to rate the information/education they received:

• In the first year
• From the end of the first year until the present day

As before, they were asked to score their experience on a scale of poor/below average/ average/good/excellent or ‘not applicable’ at different stages of their journey.

The results showed an overwhelmingly positive response.

Before transplant, 2% respondents scored the education/information they received as poor/below average, while over 80% rated it as good/excellent.

After transplant, 3% respondents gave a score of poor/below average and over 75% rated it as good/excellent.

Respondents were also asked if the information they received was easy to understand and over 90% replied positively.

4.3 Advice

Transplant recipients need to be able to access advice to support them in living with a transplanted organ.

To explore patients’ experiences, respondents were asked about their ability to access advice from the transplant team and about how helpful they found online sources of information.

Do you feel able to contact your transplant team for advice?

• by telephone
• by email
• using a portal or website

The responses were positive, with 91% of respondents reporting being able to contact their transplant team by telephone, 44% by email and 22% via a portal or website.

4.3.1 Are you aware of information available online about living with a transplant?

If yes, please tell us how helpful you found information from the following sources:

• NHS Blood and Transplant (NHSBT)
• Transplant centre website
• Local hospital website
• Patient support group
• Charity support group

Respondents were asked to score the resources as unhelpful/neither helpful nor unhelpful/helpful or ‘not applicable’.

While 66% of respondents were aware of information being available online, it is somewhat concerning that 28% had no knowledge of this. However, this may reflect differences in how some patients prefer to access information.

When asked to state which online resources they had found helpful, the feedback was disappointing, with only half of this subgroup of respondents reporting that they had found the NHS Blood and Transplant website (34%) and their transplant centre website helpful (33%). Local hospital websites were not rated highly (18%), which is understandable as they may not provide relevant information for recipients. Patient support group and charity support group websites were reported as helpful by only 24% and 17% of respondents respectively. However, it is worth noting that in many cases this may be because patients had not looked at those websites, rather than because they specifically did not think they were useful.

When asked about other online resources, some respondents stated that the advice received from transplant units was comprehensive and more reliable than other resources. Others reported finding patient support groups hosted on social media sites such as Facebook, Instagram and Reddit helpful, and some US-based websites were included.

Suggestions for how information and advice could be made more easily available included using alternative formats, such as posters, leaflets or information being integrated into appointment letters. It was felt that patients should be signposted to trusted resources and a centralised website or a dedicated ‘app’ was suggested.

Local support groups functioned as a means of sharing resources and helped transplant patients build experiential support networks.