National Aspergillosis Centre (NAC) regularly asks its patients for their views on the service that they have been offered. This is mostly done by anonymous surveys, most frequently by offering all patients who have attended a clinic an opportunity to comment each time they visit, using links sent by phone text messages. Over 95% of our patients can be contacted by this method.
NAC also carries out an annual survey that is much more detailed and longer. Links to this are also sent out via phone text though in future we will be able to offer it to patients who attend our face-to-face clinics too.
These surveys are anonymous so we cannot know who has completed each one. Sometimes a patient may ask a question that needs an answer but of course, we cannot contact them directly, so we have designed this page to give us an opportunity to provide examples of questions asked and our responses to those questions.
Summary 1: Annual report 2022
19/40 (48%) of patients had been told about symptoms to be aware of at home (2021 76%) which is quite a large drop from the previous year.
Response from NAC team
NAC needs to ensure all patients are informed about symptoms to be aware of at home, due to medication or illness – CARES team will draw up a leaflet to be distributed (In clinic/post/myMFT).
Summary 2: Annual Report 2022
40/40 (100%) agreed that they could understand the answers given by NAC staff when they asked them questions. However, comments suggest that one patient had difficulty understanding answers to questions over the phone.
Response from NAC team
NAC Team asked to be careful to ensure the phone service is clear and that the patient can hear well during the consultation.
Summary 3: Annual Report 2022
13/40 (33%) stated an interest in hearing more about palliative care (2021 46%) which is a drop in 2021 figures but still a large increase in earlier years (2020 & 2019 10%).
Response from NAC team
CARES team to design a leaflet for distribution (In clinic/post/myMFT)
Summary 4: Annual Report 2022
10/12 (83%) felt that they were treated with respect and dignity during an in-patient stay with NAC at Wythenshawe (2021 95%), a drop of 12%.
Response from NAC team
Much of this shortfall is due to a single patient who was unhappy that they had been searched for bruising on admission in 2018. They were subsequently much happier with OPAT.
Summary 5: Annual Report 2022
When asked if there was a reason why they had not visited the website (8/14 57%) of those who replied had never heard of the website:
Response from NAC team
CARES team to promote aspergillosis.org to patients/leaflets/myMFT
Summary 6: Annual Report 2022
In 2021 many patients stated that the reason they had not visited the website was due to lack of access to the internet (9/19 47%). Clearly, those people would not have access to the survey via the internet in 2022 though we did offer to complete the survey for them over the phone.
Response from NAC team
We cannot use an online survey to reach people who have no access to the internet, and offering phone contact to complete the survey has worked to a limited extent as few made contact over the phone. myMFT may encourage people to get access to the internet but there will be people who have no access for some time yet. Instead we need to contact face-to-face at clinic and post out paper versions of information for these groups.
Summary 7: Annual Report 2022
Comments tell us that many did not know about the Zoom monthly meetings/Zoom social meetings/Facebook groups/Telegram
Response
This implies that more might attend our Zoom meetings/Groups if they were more widely known about. CARES team to promote more to patients text/leaflet/face-to-face/myMFT.
Summary 8: Annual Report 2022
In general comments, a patient asked if we could help with benefits.
Response
CARES team to discuss at monthly patients meeting and provide printed material.
April 2022
I prefer face-to-face consultations.
Response
It was not possible to offer face-to-face appointments during the COVID-19 pandemic but patients can now request a face-to-face consultation if they prefer.
June 2022
Would it be possible to receive what was discussed [during a phone consultation] in writing so [we have] a record [we] can refer back to?
Response
???
August 2022
I think the appt should have been with a consultant as we were deciding about stopping the medication.
Response
???
September 2022
The video link did not work.
Response
If the video link for a consultation does not work there can be many possible causes. If video does not work we will switch to contacting you by phone.
September 2022
Comments about specific appointments will be communicated with the member of staff concerned for their information. Unfortunately as these surveys are anonymous we cannot reply personally.