Involving patients in their own treatment & research Aspergillosis Patients Meeting September 2011

LED BY GRAHAM ATHERTON SUPPORTED BY GEORGINA POWELL, MARIE KIRWAN & DEBBIE KENNEDY NAC CENTRE MANAGER CHRIS HARRIS TALK GIVEN BY DEREK STEWART PATIENTS REPRESENTATIVE OF THE FUNGAL RESEARCH TRUST NATIONAL ASPERGILLOSIS CENTRE UHSM MANCHESTER Support Meeting for Aspergillosis Patients Fungal Research Trust

Derek Stewart
Derek Stewart has now joined the FRT Board as a Trustee. Derek has a rich and varied experience as a patient advocate and activist.
Diagnosed with cancer in 1995, Derek became a patient voice and chaired the first national patient and carer group in cancer research. This led to him becoming a chair of a primary care trust for 5 years and a number of other roles.
Currently, one day a week, Derek is an Associate Director for Patient and Public Involvement at the National Institute for Health Research - Clinical Research Network. This is firmly about ensuring that the patients' voice is heard and that we harness 'patient power' to help them gain access to studies and improve the quality of research.

National Institute for Health Research
" Research is a core part of the NHS. Research enables the NHS to improve the current and future health of the people it serves. The NHS will do all it can to ensure that patients, from every part of England, are made aware of research that is of particular relevance to them. The NHS is therefore putting in place procedures to ensure that patients are notified of opportunities to join in relevant ethically approved research and will be free to choose whether they wish to do so. " (Handbook to the NHS Constitution, January 2009)
More information on the new NHS consititution here: http://www.nihr.ac.uk/awareness/Pages/awareness_constitution.aspx

Aspergillosis Patients Group Meet with Derek
Derek came along to the Patient Support Group meeting in Wythenshaw on 1st September and has written down some of the key elements of his talk.
"It does not matter whether a person runs, cycles or climbs to raise money for research, rattles a tin in the street, writes a recipe book for sale, organises a support or self-help group, speaks up on behalf of others or sits on committees and meetings.
The single common thread is that each person wants to make a difference.

Your Health Service Needs You
The NHS needs to hear from patients about their experience whether good or poor if it is to improve. It is also important that patients and carers are informed about research that is relevant to their condition.
I was really impressed when I attended the Fungal Research Trust day in London in June. I thought that it was one of the best examples of bringing together patient experience together with information on treatments and the latest about r esearch .
Often, when I visit patient groups they are focussed rightly on patient support. When I go to research meetings there are rarely any patients in attendance. Although it has improved greatly in recent years there is still a gap between what patients think are relevant ideas for research and that which is carried out by many researchers

Examples
This is clearly not the case within FRT but there may still be certain questions that aspergillus patients have which may not have been researched.
There is a story about a clinical researcher who spent his life treating people with arthritis who was diagnosed himself with the condition. He then said that if he had known earlier in his career what it was actually like then he would have designed very different trials.
Derek gave some examples of where patients are Making a Difference - Copies of this report are available at http://www.crncc.nihr.ac.uk
INVOLVE is an organisation that provides information for patients and carers who want to get involved with researchers - www.invo.com
Derek is looking forward to attending his first meeting as a Trustee and finding ways of keeping in touch with the Aspergillus Support Group.

Help and Get Involved
If you are inspired by Derek's talk and want to get involved you can contact us on:
[email_address]
View all of our meetings at http://www.aspergillus.org.uk/newpatients/patientsmeeting.php
And watch live & ask questions at 1pm – 3pm BST on the first Thursday of every month at http://www.aspergillus.org.uk/newpatients/monthlymeetings.php

Programme
1pm Introduction
1:05 Derek Stewart, FRT Patient trustee
1:45 Questions
2:00 Tea & Coffee
2:15 Discussions:
Introduction to Genetics – pick up notes if interested
New patients information leaflets ready to go
Complications of ABPA
SAFS
New QoL data entry epads -
Forget me not cookbook
Funguide Cook book – keep sending in recipes
Christmas Raffle & Bear competition
Expert Patients Programme - comments
3:00 Close

Introduction to Genetics
After last months talk by Nicola Smith on genetic susceptibility to aspergillosis it is worth clarifying what genetic mutations are and why they are important
All of this information is available in the notes written from last months talk which are available on the Patients Website at http://www.aspergillus.org.uk/newpatients/patientsmeeting.php
Also some copies available as a handout at this meeting

Protein
We are completely made up of water and protein
Protein is an immensely adaptable substance
Hard and rigid e.g toenails & fingernails
Pliable & tear resistant e.g. Skin
Clear & runny e.g eyes
Highly variable, small enough to pass through our bloodstream, sticks to any invading substances e.g. Antibodies
Help produce energy & many other chemicals we need e.g. enzymes
All these different types of protein are made by sticking together amino acids in long strings from a selection of just 22
The properties of a protein depend on which amino acids are used and the order in which they are placed

Proteins

Information store - DNA

Base pairing
There are 4 bases in DNA T, A, G, C
There are 4 bases in RNA U, A, G, C
G pairs with C
T/U pairs with A

Information translation into Protein

DNA/Protein language

Mutation
A change in one base on DNA can translate into a completely different amino acid being inserted into a protein.
If that amino acid has the wrong properties for that protein it can cause serious problems
Result: The protein may not work as well
If the protein doesn’t work well then part of the whole organism could be defective e.g. Our immune system

Information leaflets survey
SAFS & Complications of ABPA
11 forms returned
SAFS – 11/11 found information clear, useful, informative
Would know when to report to GP
ABPA – 10/11 found information clear, useful, informative
Will follow up one person who felt this was not the case
All would know when to report to GP
3 volunteers for fundraising – Thank You we will be in touch.

Feedback on data entry epads
Lots of good feedback on the day and we learned some useful pointers which would need consideration if we use these in the clinic
Battery life ok – just! Will need to be fully charged in advance
Learned how to enter text after trial and error (thanks Chip)
The survey showed that everyone found it easy to hold & use
Data was successfully sent to the database – works well with low signal
Main limitation was that some patients would find it difficult to use so can’t be a universal solution for everyone
BUT could reduce the number of forms filled in & speed up score calculation
Need to work out how to generate a paper form from entered data for records, then we will trial it in clinic.
Thanks for your help with this!

Expert Patients Programme
Several people felt the availability of a course that they could do from home would be something they were interested in – keep an eye out for this in the New Year

Next Month - Speaker
Ray Ashleigh: Embolisation

Thank You
“ The best chance we have of beating this illness is to work together”
Living with it, Working with it, Treating it
Fungal Research Trust

Involving patients in their own treatment & research Aspergillosis Patients Meeting September 2011

by Graham Atherton on Sep 08, 2011

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Involving patients in their own treatment & research Aspergillosis Patients Meeting September 2011 — Webinar Transcript