How are patients involved in licensing new medications?

On 13 February 2012, Genetic Alliance UK published a report of a Citizens Jury’s findings.  The Citizens Jury was tasked with deciding on the balance of risk versus benefit of new medications for serious and rare diseases.  We are hoping that this report will influence the regulators for those of us with rare, serious diseases, who struggle to find appropriate medications.  The regulators often take a very cautious view about the risks of medications – however, many of us with serious conditions are prepared to take risks (as long as we are fully informed) if the benefits are that we can continue to live a good enough life.

This is something we, with Birdshot, already face.  We know that our medication regimes can be toxic, but we make the fully informed decision to take medication in order to preserve our sight.  That is our choice.

Rea was a member of the Citizens Jury – here she is with her fellow jurors.

More information on the Citizens Jury can be found at: http://www.geneticalliance.org.uk/latest-news.htm

Here are the findings of the Citizens Jury:

1. Regulators should include psychosocial factors in their decision making – Jurors would like to see regulators broadening the range of issues which they consider when deciding whether to approve a new medicine. Jurors have generated a list of 25 psychosocial factors that are important to them, to be included in the assessment of risks and benefits of new medicines.

2. Regulators should be more permissive for those treatments for people with rare and/or serious conditions-Because of their often unique circumstances, patients with rare and/or serious conditions may well be willing to take greater risks than the system currently allows. They should be given that choice.

3.  Patients should be more involved in all stages of the process, from setting the research agenda, to post-marketing authorisation decisions – Patients’ experiences and preferences should be included at all stages. Patient representatives (such as patient group members) should be supported to be joint decision makers, alongside clinical experts, throughout the process.

4. Patients should be better supported to make their own decisions – Decision-making about new medicines is challenging, but possible for most patients provided they are given adequate information and support? (or something like that). Jurors generated a list of questions to help guide patients when deciding on their own treatment options.

Food Poisoning and autoimmune diseases

Many research studies have looked at the link between food poisoning and the onset of diseases, either shortly after the food poisoning, or later in life.

Last week, the Daily Mail published a short article by Fiona MacRae, the Science Correspondent, reminding us of this link. The article states that Salmonella, E Coli and other types of food poisoning may have lifelong consequence.  This includes the possibility of autoimmune diseases. The full article can be accessed at:

http://www.dailymail.co.uk/health/article-2117948/Food-poisoning-lifelong-consequences-bugs-linked-host-illnesses.html

This article got us thinking. We know of at least two people who had very very severe food poisoning shortly before the first Birdshot symptoms occurred (one of these people is Rea).

Can anyone else identify this as a trigger to Birdshot? Or can you think of any other possible trigger? It would be really helpful to start collating this information, so we can begin to identify whether there are common ‘triggers’ or a whole range of triggers.

Birdshot Uveitis Society – Registered No: 1145349

Dear All,

We are delighted to be able to inform you that we received confirmation of our registered charitable status today. Up until now we have been part of the Uveitis Information Group. The UIG is registered in Scotland and is in the process of becoming Uveitis Information Group (Scotland) and concentrating on its work within Scotland.

Birdshot Uveitis Society is now registered in England and Wales.

We will continue to work closely with the UIG scottish charity and also link where appropriate with Olivia’s Vision which many of you will already know is a new uveitis charity registered in England and Wales, and set up by a parent of a child who has uveitis. It is worth pointing out that Olivia’s Vision supports all types of uveitis – not just uveitis in children and fundraises to help increase the number of uveitis specialists. You can find our more about Olivia’s Vision on their website.

Our registration number is: Birdshot Uveitis Society – Registered No: 1145349.

We will be making changes to our website and information leaflet to reflect this change.

Kind regards

 

ANNIE AND REA

Birdshot Uveitis Society

London/SE Meeting 21st January – more details!

Happy New Year! We hope you had a good festive season.

We are looking forward to seeing everyone on 21st January from 1.30pm at St John’s Hall, New North Road, London N1 6JB. We will be providing tea, coffee and biscuits.

Sandra has very kindly worked out directions to the hall:

 From Old Street Station  10 min walk

  • Exit one, go up stairs to the right and stay on that side and keep going straight.
  • First sign you will see is Brunswick Place  carry on past and you will pass the Premier Inn
  • Next sign Chart Street,  on left side of road you will see City College,
  • Next sign Haberdasher Estate also there is a Barclays Bike station and a Tesco Express.
  • Then you will see a set of traffic lights and a green coloured shop on corner
  • Look to your left and there is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St John’s Hall

From Moorfields Main Entrance  7 min walk

  • Go Right towards Old Street Station
  • At first set of traffic lights cross and go down Provest Street, there is a bus stop from which St John’s Hall is one stop
  • or carry on walking and follow the road round into Vestry Road, near the top of road on left  you will see Nile Street Dentist
  • At top of the road turn left into East Road, you will see Tesco Express and a set of traffic lights with a green coloured shop on corner.
  • Cross at lights and straight in front you is a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

From  Moorfields Main Entrance  7 min walk

  • Go left towards Angel, cross the road at the traffic lights, there is a cafe on the corner.
  • Turn into Sheppness Walk, from here you can either:
  • Get 394 bus from the stop opposite the police station to Minton Street which  is about 5 bus stops.
  • Get off the bus at Minton Street and go right past the Beehive Pub.
  • In front of you is a green coloured shop, turn left just before the shop and you will see a GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

OR

  • Walk up to traffic lights, turn left into Murrey Grove, half way down there are some shops.
  • At traffic lights at end of road look straight across and you will see GREEN HUT and Barclays Bike Station
  • The GREEN HUT is St Johns Hall

If you are definitely planning on coming on the 21st please could you reply “yes” to southeast@birdshot.org.uk so that we have an idea of numbers and please could you also let us know if you are travelling from Kent.

If you need any further information please do not hesitate to contact us, we hope to see everyone on the 21st.

Kind regards

 

Sue, Sandra & Lesley.

Planning the Birdshot Day of 3rd March 2012

13 of us met up on Saturday 22nd October to plan the agenda for the next Birdshot Day on 3 March 2012.  We wanted to say a huge thank you to Sandra (who is planning to hold a fund raising stall on the Day, selling her handicrafts, Janie, Julia (who is offering us help with our administrative work), Sue W, Ann, Lesley (who are also offering help with our work), Hilary, Colin, Gail, David B.

We explained that we are trying to set up a  Biobank to collect and store samples from each person with Birdshot so that research can be carried out by clinicians and researchers throughout the UK. Most people who attend regional centres could have their samples taken at their regional centre.

For those people who do not attend regional centres, (we think there may be about 40 people), we are hoping to take their samples at the Birdshot Day, if we manage to progress the Biobank in time.

We, therefore, need to accommodate the taking of these samples within the Birdshot Day, without disadvantaging these people and making them miss the talks.

OPTOS will also be there. They are one of our sponsors for the day. They are coming along with their imaging equipment and a technician. We hope that they might be able to image every single birdshot person’s eyes on the day. It is quick, easy and painless takes about 30 seconds an eye, and it is fun. (We know we had it done at the London Euroretina this year). This will give a snap shot of all the eyes there on the day and will be very useful information for our doctors and clinicians.

We agreed that we would have an ‘open’ morning at the Birdshot Day with a variety of activities and keep the talks for the afternoon.

There were a lot of suggestions for the morning and afternoon, and we have tried to incorporate all views from our meeting, as well as all views expressed through feed-back from the previous Birdshot Day.  Here is what the timetable looks like following all feed-back.

If any of you have further suggestions for stalls, please let us know.  More importantly, if any of you have any contacts to staff these stalls, please, please get in touch with us.  We need all the help we can get!

Time
10 am – 1.00 pm (including tea and coffee) General Activities including networkingTaking samples of boods/DNA, etc for those people who do not attend regional centres Stalls: (Please note that these are all proposals and we need to do some work to see if we can get hold of these people – anybody able to help?) 

Fund-raising staffed by Sandra Foot to raise money with her arts and crafts  anybody else want a fund-raising stall?

BUS staffed by Annie and Rea to offer information and advice

Professionals  staffed with ophthalmologists and uveitis nurses so that people can ask questions and get adviceExpert patients for advice information and support any of you feel you are expert patients who can advise?

Expert friends, families and carers to provide information and advice.  Anyone an expert carer/friend/family member?

Regional stalls – Where we have already set up regional Birdshot networks (e.g. London) – information on those networks and how to join

Information about the National Birdshot Research Network and the Birdshot Biobank

How to take your medication – information on how and when to take your various different medications to make them most effective – a pharmacist – who?

Low vision aids including specialist glasses

Driving with Birdshot information on DVLA requirements and driving options – Lesley F

Registering as partially sighted benefits and disadvantages of registering – who?

ipads and kindles so that people can see whether using these will help them read books, etc – John H

Eye drops Scope Ophthalmics for those people with dry eyes and belpharitis  – Rea

Nutrition information on diets and nutrition to keep us healthy – who?  Anyone able to help with this?

Supplements  information on supplements and what supplements might help and how to take them with your current medication regimes – Nick and Caroline

Cosmetic surgeon who is qualified to advise about whether various procedures can be undertaken while taking our particular medication – who? Anyone able to help?

RNIB – information on services offered – Rea

AGNSS and SCG  The specialist government agencies that decide on what medications people with rare diseases should have available to them – Rea

Bates/Alexander and Head massages Lizzie May

Chiropractic – Mikael Petersen looking at your posture and what may help

Complementary approaches – mindfullnessacupuncture, ayurvedic medicine, etc – who?

Vision simulator

RCO Bosu

Optometrists – invite your optometrist

National Voices

The Eye Care Trust

 Olivia’s Vision

 Vision 2020 (UK) – Mike Brace

Audio Books where can we get these from?

Susan Piper’s paintings

Plenary Sessions – if we have a couple of small rooms available, there are requests for patients to tell their stories to those who want to hear other people’s stories and for people to talk about self-help

1.00 pm – 2.00 pm Lunch
2..00 pm – 2.30 pm The latest news on Birdshot – latest research, latest medication regimes Team of specialists involved in National Birdshot Research Network
2.30 pm – 3.00 pm Introducing the National Birdshot Research Network and the National Birdshot Biobank Team of specialists involved in National Birdshot Research Network
3 pm -3.30 pm Bones, DEXA scans and keeping your bones healthy

OR A patient Story

OR  Nutrition, anti-inflammatory diets and supplements

Dr John Armitstead from St Mary’s Paddington

We have had lots of patients offering

Who?
3.30 pm to 4 pm Tea
4 pm to 5 pm Panel Session – professionals and expert patients answer your questions Team of specialists involved in National Birdshot Research Network Rea Mattocks and Annie Folkard

 

Setting up Regional Networks

A group of us met on Saturday 22 October to try and plan the Birdshot Day of 3rd March 2012. It was such a good meeting, and everyone thoroughly enjoyed networking, comparing medications, comparing symptoms, having a laugh, etc, that it was decided to try and hold regular socialising events. Sandra F, Sue W, Ann and Lesley decided to set up the London Regional Birdshot Network (i.e. all those people who attend Moorfields, St Thomas, Croydon and who reside relatively closely to London).

Colin and Gail decided to set up the Hampshire and surroundings Regional Birdshot Network (i.e. all those people who attend Southampton, Winchester and surrounding hospitals and who reside relatively close to these areas). They have some exciting plans about seeing whether the main consultant can attend the first event.

We also are in touch with Adrian in Manchester who in his spare time, supports people with glaucoma via a local support group. Annie met him at the recent Moorfields Glaucoma day. Adrian would like to extend an invitation to our Birdshot members to attend the meetings he organises as he thinks that some of the talks he organises may well be relevant. There next meeting is on 9th  November  and full details can be found here.  Please do get in touch with Adrian if you are interested in attending.

It would be really good if anyone in Bristol or Birmingham or Leeds or Scotland or Ireland or Wales or Newcastle would like to set up Regional Networks.  Please let us know if you are inspired to so something by the action that Colin, Gail, Sandra, Sue, Ann and Lesley are taking.  We would love to have coverage right across the UK!

If you are inspired, we can tell you what is being planned for London and Hampshire and Manchester. Please email us to let us know of your interest.

Long live Team Birdshot – it just gets better and better!
Rea

Lesley Garrett becomes our patron

Credit: Simon Fowler/Decca Records

The Birdshot Uveitis Society is proud to announce that Lesley Garrett, CBE, the UK’s most popular soprano, has recently become our Patron.

Lesley Garrett, CBE said: “Our eye sight is so precious and it is only when we face losing it that we realise how much we take it for granted.”

Thank you so much Lesley for agreeing to take on this role for us.

Lesley Garrett, appears regularly in both opera and in concert, on television and CD; she has won both critical acclaim and the affection of many fans and music lovers. As a recording artist, she has thirteen solo CDs to her credit and her major television appearances include Lesley Garrett…Tonight, The Lesley Garrett Show the documentary Jobs for the Girls, Viva la Diva and The Lily Savage Show. Lesley was also the subject of a South Bank Show on LWT and her most recent music programmes include The Singer, Sacred Songs and Lesley Garrett – Desert Dreams all for the BBC.

Lesley’s recent television appearances have included the BBC1’s hit show Strictly Come Dancing, and Who Do You Think You Are? and she was one of the judges of Comic Relief Does Fame Academy and for ITV the daily show Loose Women. She also presented two series of Christmas Voices and recently When Royal’s Wed for BBC1. In May 2005 she both sang at and hosted the Classical Brit Awards, filmed at the Royal Albert Hall for ITV. During the autumn she sang the title role in Welsh National Opera’s new production of The Merry Widow and in autumn 2006 she  joined the cast of The Sound of Music as the Mother Abbess in the West End production at the London Palladium. In 2008 she performed the role of Nettie in the West End production of Carousel and in 2011 she returned to The Sound of Music for the final two weeks of the touring production.

Lesley was awarded a CBE in the 2002 New Year’s Honours List for Services to Music.

You can read more about the famous singer on her website:  http://www.lesleygarrett.co.uk/index.php

 

 

BUS Board meets Moorfields Board

Rea, Annie and three of the new BUS Directors, Peter, John and David, met with the Board of Moorfields Hospital on 1st September to give a presentation on the benefits to the NHS of involving patients in all aspects of their care and in research. BUS used the very successful outcomes of the first Birdshot Day held on 11 September 2010 to illustrate how much more has already been achieved by patients and professionals working in partnership. We are hoping that promoting patient involvement will ultimately mean that people with Birdshot will be less likely to lose their vision, will receive better treatment and will stay healthier.

This link takes you to the presentation that was given to the Board. They were interested to hear first-hand about the partnership and were keen to be supportive. Professor Peng Khaw said that “the patient is central to everything we do at Moorfields: from direct treatment and care through to training of doctors, nurses and other professionals as well as research into better diagnostic techniques, monitoring of disease and the development of safer, more effective surgical and clinical interventions.”

We believe that it is vital to fully understand your treatment and the implications of it, and to feel that you are working in partnership with your consultant and that your consultant fully understands you and the lifestyle you wish to lead whilst living with a chronic long term condition. A lot of research has been undertaken to show that patients who feel more in control, have confidence in their consultant, feel they are being listened to and feel that their consultant sees them as a person (rather than just a set of eyes that are malfunctioning) are likely to have more positive outcomes (and are also likely to save the NHS money!) The term for this is the ’empowered patient’ and we are keen to get this message across to the people that count in the NHS.

We have personal experience of not always being treated as an individual and we have heard from some of our members who have had similar experiences. There have been a number of issues raised with us such as not getting full explanations of the medications and side effects of the medications proposed; not being given choices about appropriate medications; medications being given that cannot be incorporated into the patients day to day life; numerous hospital appointments being given that jeopardise a patients work; previous test results not being available at the appointment, wasting the time of the patient and the consultant; patients sitting in a consultation whilst the consultant discusses their case with other professionals as though the patient is not real; patients not being seen by someone who has expertise in Birdshot and sometimes seeing more junior doctors who are not quite sure what to recommend; etc, etc. We have heard them all! One of our members told us “it’s like you are not even there when you go to an eye clinic appointment“.

This is not to suggest that everyone has these experiences, and there are a number of us who receive wonderful, patient focused care from the NHS. We celebrate and commend the professionals and organisations who have achieved this. BUT, we do want this to be the ‘norm’ and we want everyone with Birdshot to receive this sort of care.

We, at BUS, are really encouraged that Moorfields offered us an hour at their extremely busy Board Meeting, and that they took the time to ask questions and expressed huge interest in what we had to say. They also pointed out that the model we developed of the Birdshot Day has now been applied to Glaucoma, and the first Glaucoma Day will be held on 1 October 2011. As they say, imitation is the sincerest form of flattery, so we must be getting our messages across!

We very much hope that the idea of patient involvement can be duplicated in a similar way for other medical conditions across the country.

For those of you who attend Moorfields, they have set up a patient experience committee and we will keep you informed of what is happening on the committee. If any of you have been invited to contribute to this committee, please let us know, so we can inform our members.

 

BUS moves to the next level

We are very excited to announce that BUS is growing and developing.

Until August 2011, BUS was part of the Uveitis Information Group (UIG), a charity working for people with all forms of uveitis.  However, this arrangement became difficult to maintain because of rapid changes in the NHS (particularly in Scotland where uveitis services have developed at a faster pace), and changes in the charity sector.

UIG AND THE NEW SUN

Because of this, UIG will focus on Scotland and will evolve into becoming the Scottish Uveitis Network (SUN) – an organisation made up of NHS staff and patients.  Phil Hibbert will be leading these developments in relation to patient support in Scotland and SUN will work with all forms of uveitis.

BUS DEVELOPMENTS

These developments give BUS the opportunity to re-focus and establish itself as a charity in its own right.  There are a number of steps we will need to take but we have already fulfilled the first one of becoming a limited company and Birdshot charity. The formal registration should be complete by the end of the year.

BUS will work with all Birdshot across the UK, and expand its international links and expertise. It will continue to work in partnership with sister Birdshot organisations in France and the US.

We have been so very lucky to get help from two people who are involved with Birdshot and one person who is involved with PIC (Punctate Inner Choroidopathy – another rare white dot syndrome).

Peter Edney (far left), our treasurer,  is a practising accountant, and is helping us become a registered company/charity.   His wife, Janie, has Birdshot.

John Hall (left) has Birdshot and is a very successful business man.  We are really lucky to benefit from his business knowledge and experience.   He is helping us to plan for the future of BUS.

David Bethell is also part of  the BUS team.  As many of you may know David is our graphic artist and has been involved with BUS virtually from the start.  He designed our fabulous logo and continues to come up with imaginative ideas for our posters and Birdshot Day leaflets.  David also has Birdshot.

Dave Stead has PIC and runs a specialist PIC information and support website at: http://www.pic-world.net/.   (PIC is a rare form of auto-immune posterior uveitis, which leads to punched out white spots at the back of the eye).   Whilst still retaining its own identity, the PIC Society will be part of the new BUS charity.  This will mean that in addition to providing specialist support for people with Birdshot, Dave will provide specialist information and support  for people with PIC under the BUS umbrella.

Olivia’s Vision

In addition, a new charity for people with uveitis in England, Ireland and Wales has been set up by a mother of a child with uveitis. This new charity is called Olivia’s Vision and can be found at www.oliviasvision.org

NATIONAL ORGANISATIONS WORKING WITH UVEITIS

The three new organisations working with uveitis in the UK (BUS, Olivia’s Vision, SUN) will liaise to make sure that people are directed to the appropriate place for help.

THE FUTURE

At BUS, we have already been successful in raising the profile of Birdshot, attracting members with Birdshot and professionals working with Birdshot, and setting up a research network. The new BUS will give us greater strength to continue these activities.  We also hope to develop a similar response for people with PIC.

We will keep you informed of any developments, but please be assured that for all of you who are members of BUS, whether you have Birdshot, are a family member or a professional working with Birdshot, the only changes you should notice is that we are better organised and have even more impact!

The First Birdshot Day goes Viral!

Moorfields Hospital and UCL (University College London) Institute of Ophthalmology run the Biomedical Research Centre for Ophthalmology (BRC). This centre comes under the National Institute for Health Research (NIHR), so is very influential and is part of the NHS system.

The aim of the BRC (a happy coincidence that the acronym suits Birdshot so well) is to be the leading website providing information about new diagostic methods and therapies relating to the eyes,  whether they are developed by themselves, or in partnership with other research centres, private companies or charities.

It is therefore most encouraging to see that the 2010 Birdshot Day is featured in great detail on a number of the site’s pages. Let’s hope it bodes well for future research into our particularly rare and hard to treat eye disease. The link below takes you to the first page but there are four other pages: Art Project, Outcomes and Reflections. (See the red links in the middle of the page that this link takes you to).

http://www.brcophthalmology.org/Events/BirdshotDay2010.aspx