Immunology and Allergy Patient feedback

PDF:  Home Infusion Training Patient Satisfaction Survey (January 2024).pdf [pdf] 254KB

During December 2023 we asked patients who received training for subcutaneous immunoglobulin home therapy during 2023 about the service they received.

Thank you to all who responded - we appreciate your feedback!

Responses to all the questions were very positive. On a scale of 1-5 all patients who responded expressed a very high degree of satisfaction with their home infusion training programme. Patients all agreed that they were treated with dignity and respect and 100% felt that their trainer was very knowledgeable. 

"Both nurses are amazing & caring"

"Everything was clearly explained & demonstrated"

Some of you felt that the venue could be improved, and for some it was a long  journey to attend the training. Documentation was clear, but we need to be sure  that our pump instructions match the pump supplied. 

"It's just a long journey"

"I was treated with patience and respect. Friendly & relaxed atmosphere"

The service was summed up by the patient comment:  

“Very easy, so much better & convenient at home than a hospital appointment.” 

PDF:  Eden Unit Immunoglobulin Treatment Patient Satisfaction Survey (January 2024).pdf [pdf] 233KB

We asked patients who received intravenous immunoglobulin on the Eden Unit between December 2023 and January 2024 for their feedback.

Your comments were overwhelmingly positive… 

"Flexibility of being able to book when I need to, to best support my life"

"The standard of treatment is excellent"

"Communication and quality of nursing are the best"

"I get to sit in a comfortable reclining chair, read my book, and have a couple of hours to myself to relax"

One patient commented the service would only be better if “I lived nearer!”

Only two comments suggested areas we could improve:

• “Timing of clinic follow-up a little unpredictable”

• “Sometimes it can be a bit busy when everyone brings additional friends /family to appointments. They should wait in the waiting room”

This year the questionnaire layout changed to have ‘very unsatisfied’ as the first option for a number of the tick box questions.  

The difference between the number of scores of ‘very unsatisfied’ (25%) and your very positive comments, suggest that the new layout was confusing compared to previous years. Next year we promise to create a shorter, clearer questionnaire. 

Survey question

5. How satisfied were you with the visit to the Immunologist	Very unsatisfied	Unsatisfied	Satisfied	Very satisfied	No answer	N/A
2023 / 24	25%	0%	25%	42%	4%	4%
2022	0%	0%	18%	76%	0%	6%
2021	0%	0%	8%	92%	-	-

Thank you to all who responded!

Your feedback is valuable and helps our team to continually improve the service we provide to you.

PDF:  Intravenous Immunoglobulin Treatment at Other Sites - Patient Survey (March 2025).pdf [pdf] 258KB

We asked patients receiving immunoglobulin replacement therapy at sites other than the Eden Unit, Plymouth, for feedback. 18 patients from 30 responded (60%): 

• 94% were satisfied with their treatment overall

• 94% were satisfied with the welcome, comfort, privacy and dignity on their infusion unit.

• 94% were satisfied with the standard of cleanliness and hygiene on their infusion unit.

• 83% were satisfied with the communication between their immunology team and their local treatment centre, and felt they could easily contact the Immunology centre in an emergency.

• Areas for improvement: Only 24% of patients reported that were informed about patient support groups.

Sites involved:

West Cornwall Hospital (Penzance); Falmouth Community Hospital; Sidmouth Community Hospital; Torrington Hospital; RCHT (Headland or Medical Day Unit) ; Torbay and South Devon Hospital; & Royal Devon and Exeter Hospital

The comments left were overwhelmingly positive:

"I have my treatment at Falmouth day hospital. The staff are wonderful, can't do enough for you. Food and drink are hourly. And I really appreciate them"

"My treatment at Sidmouth Hospital is excellent. The Nurses are very kind & caring. I will be happy to continue my treatment there, thank you"

"Originally my treatment had to take place in the Eden Unit - which was excellent but many miles from home in Cornwall. Now it's local and also excellent and I am most grateful"

"Over many years I have been satisfied with the day unit and Eden contacts, all seem excellent to me!"

From the 18 surveys only two comments suggested areas we could improve:

• 1 patient suggested better communication between patients and the Eden Unit.

• Another would have preferred treatment at a hospital closer to their home.

Thank you to all who responded. Your feedback helps our team to continually improve the service we provide to you.

PDF: Hereditary Angioedema - Patient Quality of Life Survey (June 2026).pdf [pdf] 306KB

Using the Angioedema Quality of Life Questionnaire (AE-QoL) patients with a diagnosis of Hereditary Angioedema (HAE) were asked to rate 17 questions about their daily life activities and their feelings about swelling episodes over the previous 4 weeks. 12 from 35 patients responded (34%).

 

The majority of patients reported ‘Rarely’ or ‘Never’ feeling restricted due to their swelling episodes across the 5 areas of daily life:

• Q1 - Work - 91% patients felt they ‘Rarely’ or ‘Never’ felt restricted.

• Q2 - Physical activity - 75% felt they ‘Rarely’ or ‘Never’ felt restricted.

• Q3 - Leisure time - 92% felt they ‘Rarely’ or ‘Never’ felt restricted.

• Q4 - Social relations - 75% felt they ‘Rarely’ or ‘Never’ felt restricted.

• Q5 - Eating & drinking - 83% felt they ‘Rarely’ or ‘Never’ felt restricted.

Only 8% (1 patient) rated ‘Very Often’ for Q1, Q2 & Q4, and 8% (1 patient) rated ‘Often’ for Q5.

 

Seven other questions also had higher numbers of patients (more than 50% when combined) who felt that their swelling episodes either ‘Rarely’ or ‘Never’ affected them:

Q6. Do you have difficulty falling asleep?

• 75% of patients rated ‘Rarely’ or ‘Never’.

Q8. Are you tired during the day because you are not sleeping well at night?

• 63% of patients rated ‘Rarely’ or ‘Never’.

Q10. Do you feel depressed?

• 63% of patients rated ‘Rarely’ or ‘Never’.

Q11. Do you have to limit your choices of food or beverages?

• 81% of patients rated ‘Rarely’ or ‘Never’.

Q15. Are you ashamed to go out in public because of the swelling episodes?

• 72% of patients rated ‘Rarely’ or ‘Never’.

Q16. Do the swelling episodes make you embarrassed or self-conscious?

• 54% of patients rated ‘Rarely’ or ‘Never’.

Q17. Are you afraid that the treatment of the swelling episodes could have negative long-term effects for you?

• 63% of patients rated ‘Rarely’ or ‘Never’.

 

Of the remaining questions several have the highest ‘Often’ & ‘Very Often’ ratings, indicating that these areas present some of the biggest challenges for patients with HAE:

Q7. Do you wake up during the night?

• 42% rated ‘Often’ or ‘Very Often’.

Q12. Do the swelling episodes place a burden on you?

• 27% rated ‘Often’ or ‘Very Often’.

Q13. Are you afraid that a swelling episode could occur suddenly?

• 36% rated ‘Often’ or ‘Very Often’.

Q14. Are you afraid that the frequency of the swelling episodes might increase?

• 27% rated ‘Often’ or ‘Very Often’.

 

Patients left the following comments:

• No episodes in last 4 weeks. Much reduced since retirement in 2017.

• I am on a drugs trial and haven't had an  attack since Sep 2025

• I have other issues that restrict diet, cause lack of sleep etc, but have only answered in relation to HAE.

 

Thank you to all who made time to respond.

PDF: Immunoglobulin Product Changes Patient Survey (May 2026).pdf [pdf] 303KB

We asked patients who had to change immunoglobulin product between April & December 2025 to tell us about their experience. 19 from 48 responded (40%).

Most patients were notified about the product change in clinic (47%) or by phone (42%) and the remainder by letter (11%). 56% received an NHS communication about the change with their appointment letter. 68% understood the need for the change, 26% mostly did, and 6% did not.

Overall high levels of patient satisfaction were reported:

• 84% were happy with how the change was communicated, and 16% were mostly happy.

• 94% felt that their privacy & dignity on the Eden Unit were protected, 6% mostly agreed.

• 88% felt that the temperature on the Eden Unit was comfortable, 12% mostly agreed.

• 100% of patients were offered a drink on the Eden Unit.

• 88% felt that the transition with their Home Care company went well, 12% mostly agreed.

• 79% rated the overall product change experience as ‘Good’, 21% as ‘Mostly Good’. No patients rated the experience as ‘Poor’.

89% of product change appointments took place on the Eden Unit. For 65% of patients this was part of their regular consultant review. 53% of patients travelled more than an hour to the appointment, and 41% brought an infusion buddy for support. Only 4 patients (22%) required additional training for the new product, and of those 4, 75% felt confident to continue to self-administer after training.

4 patients (24%) experienced problems with their new product. These problems included:

• Reactions at the infusion site

• An itchy rash with blood spots on chest and back

• Hard lumps on legs

• Having to have additional injections compared to their previous regimen

The percentage of patients feeling ‘Happy’ more than doubled from the start of the process (32%) to the end (69%). Only 1 patient (5%) continued to feel ‘Unhappy’ at the end of the process.

The comments left by patients were:

• Clear communication, warm friendly kind caring. Gave me confidence to continue at home.

• Hard to be precise as it was >7 months ago.

• Can be cold at times due to badly fitting windows.

• Process was smooth.

• I guess other than the additional 2 hour journey each way and a day off work, it wasn't a problem.

• The team are excellent.

• I attended to swap to a pump infusion. Product change explained at the same time.

• I hate the new way of administering the immunoglobulin and it takes much longer.

Thank you to all who responded. Your feedback helps to improve our services.

PDF:  Allergy Service Patient Satisfaction Survey 2023.pdf [pdf] 256KB

During June 2023 we made questionnaires available to all patients attending a Challenge, Omalizumab or Venom Immunotherapy appointment. Thank you to all who responded.

We asked about the arrangements for your appointment, the care and communication at the appointment, training, support advice, and cleanliness. Your scores were overwhelmingly positive for all the questions asked!  

From 45 responses, 44 of you ‘strongly agreed’ or ‘agreed’ that you were satisfied on the day. 

Your satisfaction was also reflected in the many positive comments left:

"No complaints at all"

"Really impressed by the staff at the Unit. I felt reassured and confident in their hands."

"Thank you for looking after me so well." 

"Very professional & friendly staff. Comfortable atmosphere."

"Excellent service and very professional staff."

Where you did highlight areas for improvement, we listened:

You said: “I was not told to ‘NOT DRIVE’ on my first visit… perhaps this is something you may wish to cover in the first correspondence.” 

• We reviewed our patient letters to ensure that the information provided is consistent and correct. 

You said:  “Got lost in hospital.”

• We reviewed the directions we provide to the Eden Unit. 

PDF:  Allergy Service (2024) Telephone clinic patient satisfaction survey.pdf [pdf] 209KB

In August 2024, to evaluate our telephone clinics, we sent questionnaires to all patients who attended an Allergy telephone clinic during the week commencing Monday 22nd July. Thank you to all who took the time to respond. 

From 37 patients, 7 (19%) returned a questionnaire.

Their responses indicated that they:

• were happy with the timing of the appointment,

• felt well prepared by the appointment letter,

• were satisfied that the majority of calls were on time,

• felt listened to, and had a chance to ask questions.

Overall, 5 patients (83%) rated their telephone appointment as ‘Good’; 1 patient (17%) rated it as ‘OK’; and no patients rated their call as ‘Poor’.

We asked what factors make it difficult to attend appointments at the hospital (Q8.). Patients responded:

• Geographical location (2 people)

• Health Problems (2 people)

• Lack of transport (2 people)

• Role as a Carer (1 person)

• Hospital Parking (2 people)

• No difficulties (I person)

And what issues would stop patients using telephone appointments (Q9.):

• 2 patients would prefer to have their appointment face-to-face.

• 5 patients didn’t identify any barriers to having telephone clinics.

What can we improve?

• 1 patient felt it was not fully explained how and when they would receive their results, and that they did not have a clear plan for treatment.

• 2 patients reported not knowing who to contact with specific concerns.

• 5 patients were not given information about support groups.

• 1 patient commented about the length of time to receive the GP clinic letter detailing their treatment plan, and another highlighted a treatment delay.

This feedback is valuable, and these issues have been discussed by the team to try to find ways to improve the way we deliver our telephone clinics. 

PDF:  Patient Survey (2025) Allergy Service Face-to-Face Appointments.pdf [pdf] 209KB

Patients attending an Allergy appointment on the Eden Unit between 22 July and 19 August were invited to take part in a patient satisfaction survey. 26 questionnaires were returned.

The responses were overwhelmingly positive with patients reporting:

Survey questions and responses

Survey Questions	Yes %	Mostly %	No %
Q2. Appointments were arranged at a convenient time	81	19	0
Q3. They felt prepared by the appointment letter	77	12	4
Q4. Their appointment started on time	76	19	5
Q6/7. Clinicians introduced themselves by name & made their role clear	100	0	0
Q10. They felt listened to and involved in decisions	95	5	0
Q11. They had a chance to ask questions	100	0	0
Q12. Diagnoses were clearly explained	92	8	0
Q13 How and when results would be received was clearly explained	94	6	0
Q14. They had a clear plan for treatment	94	6	0
Q15. They were told who to contact with concerns	89	N/A	11
Q16. They were given information about patient support groups	92	N/A	8

Q8. Factors making attending hospital appointments difficult:

• Social or work commitments 23%

• Hospital parking 23%

• No difficulties 21%

• Geographical location18%

• Health problems 6%

• Role as a carer 6%

• No answer 3%

Q9. 92% would not have preferred a telephone appointment. The majority (67%) stating they needed to be seen in person.

Q17. 100% of those who answered the question rated their appointment as good.

What can we improve?

• 1 patient commented that their answerphone message was not returned.

• 2 patients reported not receiving appointment letters (although alternative arrangements may have been in place as both attended their appointments).

• We also noted that not all the questions were answered, suggesting it may not be convenient for patients to complete questionnaires as they leave their appointments. We will consider whether sending questionnaires to patients’ homes is a better option.

Thank you for your feedback. These outcomes are valuable and have been discussed with the team to see where we can improve our services.