‘Patient voice in ophthalmology research’ meeting, July 2017

Birmingham “Patient Voice workshop” 12th July 2017

Until recently, it was unusual for doctors, researchers and patients to meet. Patients were excluded from medical conferences, other than being occasionally invited to attend as teaching subjects. Thankfully, this is changing. A meeting held at the Centre for Professional Development in the University of Birmingham Medical School (UK) on July 12th 2017 brought together patients and professionals on equal terms to exchange information and views on some of the ways patients and patient groups such as BUS are influencing ophthalmology research. Speakers included our director Annie Folkard and our research nurse Sue Southworth.  The workshop was masterminded by Birmingham’s Professor Alastair Denniston.

Annie Folkard opened the workshop by describing her journey as a patient, the pathway which led to the formation of the Birdshot Uveitis Society, and the progress that has been made to date. “The Birdshot Uveitis Society is like a huge communication hub, connecting not only patients, but clinicians and researchers as well…It’s very much a partnership between clinicians, scientists, researchers, charities and people with birdshot. We all play a part in this journey together.”

Sue Southworth, senior birdshot research nurse at Birmingham, sponsored by BUS, added: “Working with patient groups puts any clinician in a privileged position. Patients’ knowledge about their experience is valuable, important and a necessary component of discussions about eye research. Clinicians don’t learn solely from textbooks and lectures. The experience they have, throughout training and beyond, informs their practice. Patients’ experience of their condition is no less valuable. Clinicians are realising this. It is important to remember that the impetus for this first ‘patient voice’ day came from a clinician: things are changing.”

A speaker from another group reminded everybody that patients are not a separate species. They are fighters, often having to fight to be believed. However, discovering and then researching what patients actually experience from their conditions and treatments is not as easy as it sounds. There is often a mismatch between what patients and clinicians each feel is important in research. ‘Patient reported outcome measures’ (PROMS) constructed without patient input are an example of this inequality. One clinician speaker had worked with patients to develop ‘patient-generated outcome and experience measures’ (POEMS) to use in his research, to capture what mattered most to patients. Also, writing good patient information is notoriously hard to do, and this is another area where patient input can help improve matters.

Professor Peter Shah in action

Delegates heard some interesting examples of how patients had influenced research. These included the development of a patient-held ‘glaucoma passport’ to hold their essential information; an electronic way for patients to record health events between clinic visits, and the development of an ‘artificial intelligence’ application which will eventually interpret optical coherence tomography (OCT) scans, enabling new patients in the community to have quicker access to treatment.

Pearse Keane talking about the importance of communicating and the use of artificial intelligence in interpreting scans

Good communication, with the patient centrally placed, received repeated emphasis during the day. Basic principles included the clinician adjusting their approach to each patient by getting to know them; judging their feelings and reacting appropriately; being authentic and sincere, and the importance of what is said and how it is said.

During the day, sets of some quite pointed questions were presented to delegates for them to vote on electronically. One question was whether or not the current UK requirement of having to include details of patient involvement on research grant application forms was just a trendy ‘buzz word’ requirement to obtain research funding, or whether it was a genuine move to get patients involved right from the beginning of planning research, to incorporate their views as part of the research design and ensure the project would be truly relevant to patients.

The day provided a great opportunity to meet and learn from other patient groups and those with whom they work. Groups can often feel isolated in promoting the patient voice to doctors and researchers on what really matters to patients, and in trying to get that input transformed into useful research. BUS’s presence and contributions to the meeting showed we are recognised as an important part of the ophthalmology patient group movement.

Professor Alastair Denniston, meeting co-chair, said: “BUS is a brilliant example of how patients can work together to change the status quo – and bring a new culture of research to improve patient care. At a personal level, I know that my own priorities have changed as I have learnt to listen to ‘the patient voice’ – hearing what matters to people who actually live with the condition. The ‘Patient Voice Day’ was an exciting opportunity to share our experiences in the ophthalmic community and to learn from each other across a range of conditions and backgrounds.”

For more information, follow the link to: The patient is speaking, an in-depth article published in the British Journal of Ophthalmology in March 2017.

Margaret Gilmour discussing the posters over coffee with one of the delegates

Left to right: speakers, Derek Kyte, Professor Mel Calvert from CPROR and Professor Graham Lee from Brisbane

Tessa Richards, BMJ Senior Editor Patient Partnership (left) with Geraldine Hoad from Macular Society and Tasanee Braithewaite from Moorfields Eye Hospital

During the coffee break

Photo credits: Xiaoxuan Liu

Margaret Gilmour

July 16th 2017

NICE – Uveitis (non-infectious) – adalimumab and dexamethasone [ID763]

It has been a long time coming but at last you can now  access all the committee papers, presentations and the draft NICE guidance for adalimuab injection (Humira®) and dexamethasone implant (Ozurdex®) as all the documents are now available on the NICE website: https://www.nice.org.uk/…/indevelopme…/gid-ta10007/documents

This multiple technology appraisal is a long drawn process and  BUS has been involved in this from the start in June 2015.   Since then we submitted an organisation statement and provided a patient expert to give the patient’s perspective on Humira.    We, along with RNIB and Olivia’s Vision have provided the patient perspective as we feel it is very important that these totally different technologies are available for people with sight threatening posterior uveitis.

There are many pages involved in the committee papers, but below we provide an index to help you find your way around.

As an organisation we will be providing our comments about draft guidance to try and get it improved and as members of the public you are also free to submit comments via the website.  The committee will meet on the 12th April to consider the proposal and the guidance will then be published in July 2017

We have often felt swamped by all the NICE paperwork. Under the webpage heading ‘Appraisal Consultation’ you will see links to the ‘appraisal consultation document’ and to the committee papers.

There are 684 pages of committee papers, but below we provide an index to help you find your way around. The appraisal consultation document contains the draft recommendations for the use of Humira and Ozurdex and this is fortunately considerably shorter. As an organisation, we will be providing our comments about the draft recommendations to try to get them improved. As members of the public, you are also free to submit your comments on the appraisal consultation document via the website.

The NICE appraisal committee will meet again on the 12th April to consider all the comments received on the appraisal consultation document. The NICE guidance will then be published in July 2017 as a ‘final appraisal determination’.

NICE committee papers, March 2017: page index to the 684 pages

 p3: ‘pre-meeting briefing’ done for committee members before February 15th 2017 meeting (includes useful notes linked to the assessment report, eg, p9: a treatment pathway provided by the clinical advisors).

  • p65:’matrix of consultees and commentators’ (issued February 2016).
  • p61: ‘final scope’ (issued June 2016).
  • p69: ‘Assessment Group Report’ (the economic modelling done by Sheffield; issued 30th November 2016).
  • p298: AbbVie’s response to the assessment group report.
  • p318: Allergan’s response to the assessment group report.
  • p326: BUS’s response to the assessment group report.
  • p328: Olivia’s Vision’s response to the assessment group report.
  • p330: RNIB’s response to the assessment group report.
  • p350: Assessment Group response to RNIB comments.
  • p351: Assessment Group response to Olivia’s Vision comments.
  • p352: Assessment Group response to BUS comments.
  • p357: Errata to the Assessment Group Report (all highlighted in red).
  • p431: AbbVie’s submission to NICE (August 19th 2016).
  • p489: Allergan’s submission to NICE (August 19th 2016).
  • p598: BUS’s submission to NICE (summer 2016).
  • p610: Olivia’s Vision’s submission to NICE (summer 2016).
  • p624: RNIB’s submission to NICE (summer 2016).
  • p640: NHS England’s submission to NICE (includes references to sirolimus).
  • p648: Prof Phil Murray’s submission to NICE.
  • p656: Sri Sharma’s submission to NICE.
  • p663: Ali Mapstone’s patient expert statement to NICE.
  • p671: Maxine McCarthy’s patient expert statement to NICE.
  • p681: Nicola Symes’s NHS England statement to NICE.

 

 

 

Working with patients for a brighter future

What sort of impact can patients and staff collectively make on eye clinics, in supporting eye research and in education at Moorfields Eye Hospital and at other eye hospitals across the country? What sort of hospital do we want the new Moorfields to be?

I joined a range of patients, charities, and staff at a Saturday morning workshop on December 12th 2016, brain-storming how we (patients and staff) can collectively improve services at the hospital to make them more patient-centred.

There were six five-minute talks which were filmed, and then a lot of discussion around the ideas that had been raised.

I was there representing BUS, to tell our story, summarized in the illustration below. If you click on the photograph, you will see the drawing in greater detail. It really captures the essence of the workshop. Rather amusingly, you can see me standing on top of the world, under the banner “Forming partnerships” saying “I no longer feel alone.” The drawing, done during the workshop discussions as we spoke, is by a talented artist, Sandra Howgate.

15400415_10153937170831331_5299232337659056995_n
 working-with-patients-towards-a-brighter-future

The team that ran the workshop New citizenship project will be presenting a report to the hospital.

Moorfields is part of the new NHS England Vanguard hospitals collaboration. You can find out more about the Vanguard movement on the Moorfields’ website http://www.moorfields.nhs.uk/news/moorfields-vanguard-new-nhs-hospitals-collaboration-drive

Sight Village 1st – 2nd November 2016, in London

sight-village-nov-2016 sight-village-nov-2016-1

 

 

 

 

 

 

 

For those in the London UK area: Sight Village returns to London this November.  This is the publicity blurb that we recieved recently which you can down load and print off.

The popular two day event takes place at Kensington Town Hall on 1st and 2nd November. Doors open at 10am until 3pm and entry is free!

Sight Village is the UK’s leading exhibition for blind and partially sighted people and for those experiencing age related sight problems. It brings together leading providers of products and services all under one roof.

We recommend that all visitors pre-register to attend the event by following the link below. If you are unable to do this, please call a member of the team on 0121 428 5041 and we will be happy to complete this for you.

Please pass on the information about the event to service users and anyone who may benefit from visiting the event.

Interactions – a new BUS Q & A page

We are frequently asked about possible medicines interactions, particularly between prescribed immunosuppressants and complementary medicines such as dietary supplements or herbal remedies. The truth is that there is often no easy answer to many medicines interactions questions.

So, we decided to develop a new Q & A page to help you understand the subject of medicines interactions. We hope you will it find helpful, thought-provoking and enlightening.

The Q & As explain some of the complexities of medicines interactions. We hope that they will guide you in your searches and checking processes for the interactions information you need before you consider buying other medicines or supplements to add to the medication you are already taking.
Follow this link to browse the Q and A’s.

The Q & A content was created by one of our members. It has been reviewed by healthcare professionals and by members of the BUS standing advisory committee.

BUS would like to thank all those involved in preparing and checking this information.

April 2015

Have you struggled to get Humira treatment?

We recently heard from Genetic Alliance who are keen to learn about people who have struggled to get humira to treat their uveitis.  Here is an extract from their recent email to us:-

Genetic Alliance UK has been looking at access to medicine for rare disease patients. NHS England has provided us with a list of medicines requested through IFRs over the past year. One of these, Adalimumab (Humira), I believe could have been for patients with Uveitis.

I was wondering whether you have any information or case studies of your members struggling to access this medicine, and whether you would be willing to share it with us?

We are planning to do some policy work around this issue, so would be grateful for any assistance you can provide.

If you live in the UK and are able to help with this please do get in touch with BUS at info@birdshot.org.uk.

Many thanks

Specialist commissioning process update

Birdshot Uveitis Society members based in England may be aware we have been awaiting the results of the Specialist Commissioning process which has been going on over the last year. This is the process whereby government will decide which drugs are available for different rare conditions depending on the evidence that is available which shows that the drugs are effective.

We had been led to believe that the outcomes would be announced in December.  The recent news is that the decision making process had been delayed as a result of the threat of legal action by a patient group, (nothing to do with eyes or ophthalmology, but some other rare condition), who felt that the process was unfair.

In the meantime we’d be interested to hear from any patients with Birdshot Uveitis in the UK who have been turned down for treatment with either Humira or Infliximab and whose consultants are struggling to control the inflammation in their eyes with the more usual treatments. It would be interesting to get some idea about the numbers involved and to see what can be done to help.

Please do get in touch with BUS info@birdshot.org.uk and let us know if you have been experiencing this difficulty.

Getting the word out to opticians and optometrists

FD584 Logo Final copy image001Opticians and optometrists are a group of people BUS really want to reach as they are the normal port of call when something goes wrong with your sight.   In my own case I must have gone to different opticians complaining about various symptoms four or five times before one of them realised that there was  something wrong with my eyes and asked if I would like to be referred!

It was with great pleasure that we came across 2 websites for opticians and the public where there was a charity section and where our details could be added:

The “Local Optician” public site is reached by over a 1000 people each day and the “Primary Health Net” for professionals is read by over 7500 professionals, 4 x a month.  They are also going to announce our presence in their regular fortnightly newsletter to their professional members.

We also notice that a link to our website also appears in The Ask the Optician section on the Specsavers website.  specsavers-logo-gbenIt comes under the Eye Health section.   If you type Birdshot into the box it takes you to this link, which in turn provides our website address and the comment: 

“There is a web site devoted to this disease that has all the information you my need”

http://www.specsavers.co.uk/ask-the-optician/what-is-birdshot-chorioretinopathy/

It’s good to see that more and more opticians have now actually heard of Birdshot Uveitis and are taking an interest in it.  Reassuringly,  a growing number of BUS’s UK members have been referred straight to a uveitis specialist after their opticians examination revealed a problem.

 

 

Christmas card 2013 for sale

BUS Christmas card 2013Once again the Birdshot Uveitis Society’s unique Christmas card has been designed for us by Birdshot Uveitis Society member David Bethell.  From next week (15th October) they will be available for people to purchase.  All profit from the sale of these cards will support the work of the Birdshot Uveitis Society.

Cards measure 140mm x 140mm and are printed on a quality card.  They come in packs of 10 with white envelopes and are priced at £3.95 per pack.  The greeting inside the card is “Merry Christmas and a Happy New Year”.

To order your cards:

Please simply click add to cart button below, type in the number of packs of cards  you wish to purchase, click update and follow the instructions using either a credit card or Pay Pal to pay for your order.




If you wish to have cards sent to you overseas please email us with your request and we will invoice you with the correct amount to pay via Pay Pal and will dispatch them to you once we have received payment.

You may also order via the post by sending your order and cheque made payable to Birdshot Uveitis Society to BUS Box 64996. London SW20 2BL.

Postage and packing rates

Country No of packs                                                          Rate
 UK 1 – 5 packs £3.25
UK 6 – 10 packs £6.00
More than 10 packs Please email us with your order so we can calculate your postage.
Rest of World 40% of purchase price, minimum £4

Last date for UK orders to allow posting to you before Christmas: 13-Dec-12  Purchases after this date are delivered at your own risk of late delivery

If you want us to send cards overseas, please make sure you allow enough  time for delivery.

Thank you!

 

What Is Your Experience of Having Birdshot?

A major survey is being undertaken across the UK and US into the experiences of people like us with Rare Diseases.  The findings of the research will guide future research and education, so if you can spare 10 minutes to complete the survey, please click on the link below or copy and paste it – once on the site, you will see the link for the survey: Continue reading