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Can you help us to improve?

How our service is improving and what you can do to help

This page of our website will be updated from time to time to let you know what we are doing in the service at the moment.

Click to visit the QPIDS website: Royal College of Physicians Accreditation

In February 2018 the Royal College of Physicians (RCP) visited Stoke to assess the immunology service and awarded us accreditation on the day with no actions required.

The team were awarded 'Team of the Month' in April 2018 as a result of the improvements made.

 

Click to visit the IQAS website: https://www.iqas.org.uk/

In December 2018 the RCP accreditation team awarded us accreditation for the allergy service. 

We are keen to look at ways to make our service better and often patients think of things we could be doing that we have not thought of.  You can let us know in a number of ways:

Talk to us about being a patient representative.  A number of patients agree to meet with us about twice a year and discuss the service and how we can improve it.

In 2017 we had a quality review meeting and several patients attended, as well as Lynne Regent from The Anaphylaxis Campaign and Sue Walsh from PID-UK.  Since then we are continuing have similar annual reviews.  If you want to take part in the next one let your consultant know.

We also carry out patient satisfaction surveys once a year. We look carefully at all the results and act on all of the suggestions or criticisms made. Click on the following links to read our patient survey reports:

Immunology long-term follow-up patient satisfaction questionnaire

Allergy team patient satisfaction questionnaire

Immunology patient satisfaction - final results

Often patients can provide support to one another in a way that healthcare professionals cannot.  There are a number of ways that you might be able to help other patients:

When you first came to clinic you may have been quite worried and had a lot of questions.  Sometimes people worry about the management of their condition, whether it is patients who need treatment for immunodeficiency, HAE or who have to manage severe allergies.  

Sometimes it can be helpful to read about someone else's experience and know that you are not the only person who has felt like this and that often with time it gets easier.  Patient stories are a description of your experience of allergy or immunodeficiency.  We would be really keen to support anyone who would like to write a patient story for our website.

Support groups provide a chance to meet other people living with similar medical problems in your area, share experiences, swap tips and talk about what's on your mind in a relaxed, supportive setting.  The Anaphylaxis Campaign facilitate some groups in the UK: https://www.anaphylaxis.org.uk/events/support-group-map/.  We do not have any local support groups for allergy, but we would be happy to help any local groups that developed in the area.

Particularly for patients starting on immunoglobulin replacement therapy or C1 treatment for HAE it can be useful to have another patient to speak to who has been through the same experience. 

If you would like to be a 'phone buddy' and provide support over the phone to another person starting the same treatment as you, let us know.  We would not give out your phone number to anyone unless you agreed first.

We are actively involved in research into immunological conditions.

There is a huge project taking place across the UK to identify new causes of immunodeficiency and other rare diseases.  We are recruiting patients to 'the 100,000 genomes project' and a similar project that was run from Cambridge.  

You can find out more information about this by clicking on these links

http://www.piduk.org/whatarepids/research/immunodeficiencygenomicsresearch

https://www.genomicsengland.co.uk/the-100000-genomes-project/

The team presented posters at the British Society of Allergy and Clinical Immunology in 2018.