News

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 tdraft guidance to try andget 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.

 

 

 

News

Humira formulation change

The formulation of Humira (adalimumab) prefilled pens and prefilled syringes is being changed. The changeover from the original formulation to the new formulation is being rolled out in different countries at different times.

Humira’s original formulation is known to cause stinging on injection. AbbVie, the makers, have been working on a new formulation to try to reduce this. They have removed citrate and some of the other extra ingredients from the original formulation used in the prefilled pens and prefilled syringes. This also means that the volume of liquid in each pen and syringe can be reduced, so the new formulation pens and syringes contain 40mg adalimumab in 0.4ml, compared with the original formulation pens and syringes which contain 40mg adalimumab in 0.8ml. The actual adalimumab dose in the new formulation pens and syringes is exactly the same as in the original formulation pens and syringes.

The situation as at February 2017 is:

UK: new formulation pens and syringes were introduced in July 2016 (the paediatric 40mg/0.8ml vials are still supplied in the original formulation).

US: original formulation is still in use: pens, syringes and paediatric vials.

Canada: original formulation is still in use: pens, syringes and paediatric vials. Launch of new formulation pens and syringes is planned for 2017.

Other countries: no information.

If birdshotters using Humira could let BUS know when their country changes over to the new formulation, we would be very grateful. We would also like to hear of your experiences with the new formulation, particularly if you have previously used the original formulation.

News

Birdshot social in Manchester 22nd April 2017

You are cordially invited to a birdshot social in central Manchester on Saturday 22nd April 2017.  Details on the poster below.  Please email info@birdshot.org.uk to RSVP or call David on the telephone number given if you are planning to come  We need to know numbers so that we can cater accordingly.  There is not charge for this social, but you are welcome to make a donation to the Birdshot Uveitis Society if you would like.

birdshot-manchester2-arcon-colour-a4-rgb-bleeds

We are very grateful to our hosts the law firm DWF llp for kindly providing their conference facilities to us and a map of DWF’s location  can be found here.  If you require carparking please also let us know.

News

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

News

Moorfields charity walk from EyetoEye please sign up and help!

Help raise money for Birdshot research !

We thought it would be fun to get a team together to do the annual Moorfields EyetoEye walk on Sunday March 12th 2017.  After all, there are a lot of birdshotters who get treated at Moorfields and we believe it is great to be able to collaborate with other charity group events, especially if it is going to help promote relevant research.  Moorfield’s Eye Charity plans to have cake and coffee at the end and they are also going to have a live band and a bit of a celebration.  But afterwards, we wondered if we might find a venue close by (pub or cafe??) and have a bit more of an informal meet-up if we feel like it.

We’d love it if we can get 30 or 40 birdshotters walking (family and friends welcome) showing our support and enthusiasm for more research for birdshot.

So, our team is called “Birdshot.

You can sign up online https://www.moorfieldseyecharity.org.uk/eye-eye or if you prefer, you can pick up a registration form in the hospital which can then be returned to their office in an attached Freepost envelope. If you can’t find these in the hospital, Gaby in the Moorfields Eye Charity office is the person to go and find.  You may also see Gaby visiting the clinics, as part of her job is to go and meet patients.

Birdshotters can choose to walk either the 4-mile or 14-mile route according to fitness and preferences. Gaby has promised to let us have similar start times so that we can walk together, and that will also allow us to be able to get a great group photo before we set off.

4 miles – £12 to register

14 miles – £18 to register

There is no minimum sponsorship requirement: just raise as much as you can. You also get a free T-shirt and goodies at the end, but we will supply BUS T-shirts for all our walkers.

The times of the walk vary from 7.30am – 12 midday. I think we should go for a mid-morning time slot, eg, 11am, but I am open to suggestions.

If you want to take part, please sign up as directed above, but also drop me a line to let BUS know.  Here’s hoping for a sunny Sunday on 12th March!

Annie

News

Survey for prospective uveitis trial – help required

If you suffer from birdshot, or some other form of posterior uveitis (idiopathic, sarcoidosis, PIC, scleritis, etc) you may like to take part in this survey about a prospective uveitis trial for adalimumab in which Birdshot Uveitis Society are involved and trying to get funded. Your input as a patient is very important and we would really appreciate your help. To do so, follow the link below. There are only 8 short questions. Your response is anonymised and there is no need to leave an email address if you don’t want to. It would be most helpful if you say the country where you live. Thank you so much in advance.

https://qtrial2011.az1.qualtrics.com/jfe2/form/SV_e4jh8nDnKVLTZmB

If you prefer to fill in a paper survey you will find a link to a pdf here which you can download, print and fill in with a pen or as a PDF, whichever you prefer. PDF link.

Please return your responses either by email to info@birdshot.org.uk or by post to PO Box 64996, London SW20 2BL.

News

Individual funding request – a call for help!

Have you and your consultant tried and failed to get access to a much-needed birdshot uveitis treatment, such as the biologic treatments adalimumab or infliximab?

If so, this is a call for help directed to English and Welsh birdshotters who have tried unsuccessfully to gain approval to use these specialised treatments through Individual Funding Requests (IFRs). Currently, IFRs are the only way that we can hope to receive these treatments. We believe that the present situation is that nearly all IFRs are being turned down.

NHS England is currently consulting on four of its ‘generic’ policies. These are policies to commission treatments outside the normal annual commissioning cycle. We need to influence this process.

Genetic Alliance UK wants to submit a response to the NHS consultation that truly represents the experiences of the rare and genetic disease community.

Please tell us about your funding experiences via the following link that takes you to Genetic Alliance UK’s short survey:

https://www.surveymonkey.co.uk/r/IFRcallforevidence

Thank you.

 

 

News

Flu vaccination – stay well this winter

We were reminded by an email that arrived in the BUS in-box this week that it is once again time in the UK to get your flu jab:

‘You may have seen that the latest NHS Stay Well This Winter campaign has launched which encourages vulnerable people including those with long-term health conditions, anyone aged over 65 and their carers to get the free flu jab.

As you may be aware, flu is a highly infectious disease and can lead to serious complications if you have a long-term health condition like: COPD; bronchitis, emphysema; diabetes; heart, kidney or liver disease or have suffered a stroke. We are particularly trying to reach people with these conditions as flu on top of health conditions like these can easily develop into something very serious and could land you in hospital. People with these and other long-term health conditions are eligible for a free flu jab through their GP or pharmacist’.

The campaign leads with the message: ’If you are eligible for the flu vaccine get it now – it’s free because you need it. Contact your GP or pharmacist to the get the flu jab.’

As well as the categories of ‘long-term health conditions, anyone aged over 65 and their carers,’ if you are on immunosuppressant treatment, including oral steroids, at any age, this places you in a priority group for the free flu jab.

In UK and many other countries, the injectable flu vaccine is an ‘inactivated’ vaccine, so it can be safely given to people taking immunosuppressants. However, in UK, there is also a ‘live’ flu vaccine which is given to children via the nose, and this should not be given to anyone who is immunosuppressed.

Further information can be found on the campaign website at nhs.uk/staywell.

A BSL version of the leaflet has also been produced which can be viewed on YouTube at: SWTWBSLleaflet

News

Beer festival and a 52 mile walk to fundraise for birdshot

BUS members’ October fundraising
Birdshot beer bash

14671202_10210162616799994_3757892809118333742_n 14690852_10210162617040000_5366667948208838266_n

 

 

 

 

 

 

Clare Wood from Newcastle held a beer festival for us, and above and below are a few pictures that set the scene.  By all accounts it was a very jolly occasion for fellow birdies, their friends and families and work colleagues.

14708236_10210162617840020_8459995387227282270_n

Birdshot helpers

14720334_10210162617200004_2366024960487818389_n

Birdshot bar staff

 

 

 


 

 

 

 

Here is a message from Clare:   “Just a quick update on the fundraising beer festival. We are now at £2833 which is fab. Thanks to Sharron, Barrie, Debbie, Annie, and David and Carly for their help with prizes, flags and designs. Ella (my daughter) also raised £600 doing the Great North Run recently.”

BUS hopes that this might become an annual event, like the Birdshot Shoot.  Despite the massive amount of work Clare put in organising it, she has already said she will be in touch next year when (we hope) she may do another one!

52 miles for Birdshot

14708366_10208876769331003_7776853733112431166_n

Barrie Standish and his friend John are two keen fitness fanatics in the North West of England who thought they could easily manage a 52-mile stroll for birdshot.  The aim was to promote the eye condition and raise a bit of money along the way.

On Friday October 21st, just after lunch, they set off on their route.  They walked from Glazebury, going through Lymm, Knutsford and Holmes Chapel. They walked 26 miles out and returned the same way. They set off at a brisk pace, and by evening time it was obvious that they would be walking through the night.  It was not as easy as they had imagined.

The following morning at 6.02am, Barrie’s wife Debs reported on Facebook:  “He is home now and tucked up in bed. His words: NEVER AGAIN…. So proud of them. Thank you to all who have sponsored for this amazing achievement…He will suffer when he tries to get out of the bed.  I am sure there could be less challenging ways, but that’s Barrie!”

Barrie commented afterwards to his birdshot friends who had supported him online through the night: “Thank you so much for all your support and donations, really, really appreciated your well wishes, it went a long way in helping us keep going through the night. I can honestly say that I have never done anything that hard in my life! We had to dig deep and then find some more from somewhere. The last seven hours were purgatory. John lost the skin on both feet and toes, and I’ve got away with 3 blisters.  My legs are absolutely battered, I’m lying on the couch not knowing what to do with myself, it’s the tendons at the backs of my knees, I can’t straighten them properly, walking around like Max Wall.  Never ever again.”

But we say: watch this space!

Barrie raised nearly £1,000 from his walk which is a fantastic total.

What a fabulous couple of fundraising events from the north of England! Thank you all for your great efforts. BUS will be putting all the money raised from these two events towards future birdshot research.

News

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.