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BBC Radio 4 In Touch
21 March 2006

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Factsheet

Contributors:
Ian Pearce (Consultant Retinal Surgeon, St Paul 's Eye Unit, Liverpool )
Tom Bremridge (CEO Macular Disease Society)
Mani Djazmi (Reporter)
Molly Dyson (Dual action guide dog owner)
Sunil Peck (Reporter)


Macular Disease

Two new drugs which could significantly improve treatment of one of the commonest causes of blindness, Age-related macular degeneration, are awaiting approval from the national institute of clinical excellence, or 'NICE'. Although there is no current treatment for the so-called dry version of AMD, Macugen and Lucentis,are effective at combating wet AMD in its early stages. They stop the growth of blood vessels which otherwise go on to leak, ultimately causing loss of central vision due to scarring. A procedure known as Pdt is used to treat wet AMD, but its only effective for about one in three patients. If these new drugs are approved, they are likely to help a larger number of people with the disease, and doctors will have a better range of treatments to offer to newly diagnosed patients. In Touch spoke to Consultant retinal surgeon Ian Pierce from St. Paul 's eye unit in Liverpool , and Tom Bremridge from the Macular Disease Society about these latest drug developments.

  • New treatments - to be reviewed by NICE in early 2007 - see below, not available on NHS, yet Patients can ask for an experimental treatment - however, may not succeed in getting one
  • - Macugen - the manufacturer is Pfizer
  • - Lucentis - the manufacturer is Novartis
  • - Macugen and Lucentis will go through the NICE appraisal process during 2006/7.

The timetable is as follows:
Consultation on draft scope by stakeholders Feb 2006
Information meeting for consultees 05 June 2006
Closing date for submissions 1 Aug 2006
1st Appraisal Committee Meeting 24 Jan 2007
2nd Appraisal Committee Meeting 28 Mar 2007



For more information you can contact the Macular Disease Society at:

http://www.maculardisease.org/

The Macular Disease Society:
PO Box 1870
Andover
SP10 9AD
Registered Charity No. 1001198
Tel: 01264 350551: Fax: 01264 350558
email: info@maculardisease.org

Or contact St Paul 's eye unit at:
http://www.eyecharity.com/index.htm
http://www.rlbuht.nhs.uk

National Institute of Clincal Excellence:

http://www.nice.org.uk/

Midcity Place
71 High Holborn
London
WC1V 6NA

Tel: 0207 667 5800


News Round-up

Snowboarding for Earthquake victims:
-Adil Latif is aiming to raise 50 thousand pounds for over 3 million people left homeless by the earthquake which struck Pakistan last October. He's planning to do it by snowboarding down the Alps next January.

To donate to Adil, you can give through the following website:
http://www.justgiving.com/adil

Navigation System to be launched:
In May, in Birmingham, a talking navigation system is being launched to help visually impaired residents and visitors to find their way around the city centre. Organisations including the RNIB, the GDBA, Birmingham Focus on Blindness and Queen Alexander College have been involved in developing a system where users carry trigger cards which activate audible messages from units dotted around the city centre.

For more information on Birmingham's Wayfinder project, please visit:
Birmingham Focus on Blindness: http://www.birminghamfocus.org.uk/

Or contact http://www.birmingham.gov.uk/wayfinder

Guide Dog run
The first hospital dog run in Manchester is now open for business, largely thanks to efforts of Guide Dog owner Marie Rayner, who has been pushing for a relief run for 18 months. For more information on similar facilities, please contact the GDBA.

RNIB charges
And finally the RNIB is removing the £2.50 handling charge currently payable on all orders, form the 3 rd April you'll only have be to pay delivery charges for items that can't be sent as articles for the blind. The new charges will depend on the value of the goods you are ordering. Please contact the RNIB for more information.


Dual - action Guide Dogs

Mani Djazmi visits Guide dog owner Molly Dyson and guide dog, Erica up in Huddersfield . Erica is a unique guide dog, an aid and companion for deaf and blind people. To find out more, please contact the GDBA.


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Transcript

IN TOUCH 

TX: 21.03.06 2040-2100

PRESENTER: PETER WHITE

PRODUCER: STEVEN WILLIAMS

White:
Good evening. We don't do miracle cures on In Touch but we do do steady progress and self help and tonight we feature a treatment which could make a real difference to a very common eye condition if action is taken quickly enough. And what kind of community carer do you think we're talking about here?

Clip:
She stopped me from falling on the floor. I'd lost all the use down my left hand side and she helped me sit up against the tumble dryer and then she went in the fridge and got the milk out and tea bags and got out the pot out of the cupboard to make a cup of tea.

White:
Well we're actually talking about dogs and there'll be more about the dogs trained to help both blind and deaf people later in the programme.

But first two new drugs which could significantly improve treatment of one of the commonest causes of blindness - age related macular degeneration. They're awaiting approval from the National Institute of Clinical Excellence or NICE. As regular listeners will know there is, as yet, no current treatment for the so-called dry version of AMD but Macugen and Lucentis are effective at combating wet AMD in its early stages. They stop the growth of blood vessels which otherwise go on to leak, ultimately causing loss of central vision due to scarring. Well the procedure known as PDT is used to treat wet AMD but it's only effective for about one in three patients. If these new drugs are approved they're likely to help a far larger number of people with the disease and doctors will have a better range of treatments to offer to newly diagnosed patients.

Well earlier today I talked to Ian Pearce, consultant retinal surgeon at St Paul's Eye Unit in Liverpool and I asked him first of all to explain about the existent treatments for wet AMD.

Pearce:
PDT has been available in the United Kingdom for the past seven years now. And what PDT is, is a drug that's injected into the arm or the back of the hand, it goes round the body, it sticks to these blood vessels that you described earlier on that are leaking and causing fluid to develop underneath the retina and reduce the vision. Once the drug has stuck to these blood vessels we then shine a laser light on to those blood vessels and the blood vessels close and hopefully the leaking disappears. But unfortunately the leakage starts to recur again, the blood vessels open up and this generally occurs in the next few weeks afterwards and we have to keep repeating this treatment every three months. That said, the treatment has revolutionised treatment for macular degeneration over the last seven years, we've been able to treat people that we were never able to treat before. And at present we're treating somewhere in the region of about seven and a half thousand patients per year in the UK with PDT.

White:
So what about these new drugs, what will they do?

Pearce:
Well as you said in your introduction that is only about a third of the patients who really require treatment for new AMD that is occurring. And these newer drugs act in different way. These are injections of Macugen and Lucentis which are injections inside the eye and they again - they act on the signals that stimulate these blood vessels to grow. They reduce the blood vessels' growth and they reduce the leakage. But unfortunately again they do still need to be repeated at either between four and six weekly intervals. But the major exciting advantage in them is that they've opened up the treatment to maybe 15,000-20,000 patients in the UK who previously weren't eligible for treatment under PDT. In some cases there's been reported incidents of an improvement in vision of about 40%, certainly with the trials of Lucentis we've been very impressed as ophthalmologists to see this improvement in patients. And this has been new for AMD, we never knew really - we hoped we had that potential to improve patients' vision rather than just stabilising. And certainly these drugs are looking like that's possible.

White:
But I gather the absolute key to all this is speed, presumably speed of diagnosis and then speed of treatment?

Pearce:
Yes, I mean the key is education of everybody, both patients, the first person the patient might actually attend, so that people can recognise the symptoms and then get into these available treatments as soon as possible. And there's certainly a window of opportunity of really - certainly less than three months from the time of presentation to the time of treatment and we want to get those patients in as soon as possible into the system and give them the most appropriate treatment for them.

White:
So I guess it's important, given what we're saying, to say well what are the signs for people because it's as important for them to present to the doctors as it is to get the treatment quickly?

Pearce:
Yes I mean there's a multitude of signs from blurred vision to difficulty reading but one of the hardest signs for anybody to look out for is if they suddenly develop a distortion in the centre of the vision, this is often manifested for patients where they're reading along a line and letters seem to jump up or the line's distorted or edges of picture frames or windows or doors all of a sudden develop a kink in them. Now this occurs quite rapidly in patients and there are other causes for it but one of the predominant causes is wet macular degeneration and if those signs are picked up then patients should seek help and those should be acted on appropriately by whichever professional they see at first instance.

White:
Well listening to that and joining us from Southampton is Tom Bremridge from the MD Society, the Macular Disease Society. Tom, how important is this?

Bremridge:
The Macular Disease Society represents people who have this condition, for all the people we represent speed is absolutely essential. We've got two interests. One, in getting people to have access to the treatments and we feel very strongly that these treatments which are going to be looked at by NICE with a judgement being made in July or August 2007, we feel that period is too long and that where clinicians deem it suitable for the new treatments to be used they ought to be used as one of them, Macugen, is already licensed, Lucentis will be licensed by November, and so we should not have to wait until July or August 2007 before it becomes permissible to be used. And secondly, we feel very strongly about the time it's taking for patients to reach a specialist retinal centre, such as Ian works at. These centres, there are 50 centres set up throughout the country now, who are delivering PDT and are experts in these conditions but people are getting bogged down at their GP or at their optometrist and very often in the general hospitalised service before they reach a specialist retinal centre.

White:
And why is that given the urgency that we've already heard both from you and from Ian Pearce?

Bremridge:
Well basically it's because the specialised commissioners of services throughout the country who are responsible for setting up new services have not done what NICE told them to do in 2003, which was to set up fast-track processes to get people to the retinal centres quickly. In some places, Manchester for example, they work very hard on it, in other places in the country delays still exist, no joint training is taking place and optometrists don't know what to do.

White:
How certain anyway are you that NICE will approve these drugs?

Bremridge:
Well they've been very extensively trialled. Macugen already has a licence in this country. We see no reason at all why they should turn it down, it would be perverse if they turned either of them down.

White:
Can I put that to Ian Pearce as well, I mean how confident are you?

Pearce:
I think they have an important remit. Certainly, as Tom says, Macugen already has a licence for treatment in the UK, the issue is over funding. There isn't any licence for Lucentis use at the moment in the world and we would hope for a licence, certainly within Europe and the UK, by the end of the year, beginning of 2007. So I think the drugs will be available and the issue is regarding the funding. It's a very emotive subject but for the first time these drugs are showing benefits in patients we haven't been able to treat before and I agree with Tom, that hopefully they will be considered by NICE and that they hopefully will be available for all our patients.

White:
Ian Pearce, Tom Bremridge thank you both very much indeed.

And now with news of special interest to visually impaired people from all over the country here's Sunil Peck.

Peck:
Tonight we start with Adil Latif, who is aiming to raise £50,000 for over three million people left homeless by the earthquake which struck Pakistan last October. He's planning to do it by snowboarding down the Alps next January. He's in training at the moment but he took time out to tell me why he'd decided to take to the slopes.

Latif:
When I was younger I could see and I used to skateboard and then when I started losing my sight that sports weren't really for me but I've just realised that I still have a passion for sport and snowboarding seems similar to skateboarding, so I thought why not give it a try.

Peck:
Why was it so important for you to try and help these people in Pakistan, I mean it's a place thousands of miles away and people are dying all the time all over the world?

Latif:
My parents are from Pakistan and I guess this was maybe a link, that was one of the links that motivated me to raise money for the Asia earthquake and the fact that we can save thousands of the survivors if we get help to them immediately.

Peck:
And from snowboarding in the Alps to strolling around Birmingham, where in May a talking navigation system is being launched to help visually impaired residents and visitors find their way around the city centre. Organisations, including the Royal National Institute of the Blind, Guide Dogs for the Blind and Birmingham Focus on Blindness have been involved in developing a system where users carry trigger cards which activate audible messages from sites dotted around the city centre. Julie Moss is the City Centre Projects Manager in Birmingham, she told me how the system's going to work.

Moss:
Wayfinder is basically a system of talking signs. And what we're doing at the moment in Birmingham city centre, we're installing 60 speaker units at points where the users have told us we need to have them. So that will cover the railway stations, the main bus stop areas and taxi ranks. And basically what happens - a user, who will have purchased a trigger fob from either shop mobility or Birmingham Focus on Blindness out at Harborne, when they come into the city centre with the trigger fob and they approach one of the speaker units as soon as they come to within a 5-8 metre range the radio signal in the trigger will activate the unit and there will be a message.

Peck:
Julie, what will I hear if I say walk down New Street - what can I expect to hear?

Moss:
Right, well if for instance you've just come off the kerb at New Street station and come down the ramp at the Palisade Shopping Centre, there will be a message there which tells you that you're on the ramp at the Palisade, that there's a taxi rank close by, that you're at the junction of New Street and Corporation Street, so it's that kind of local information.

Peck:
And now something fellow guide dog owners visiting hospitals in central Manchester will be interested to hear. The first hospital dog run I've ever heard of is now open for business. It's largely thanks to the efforts of guide dog owner Marie Rayner, who has been pushing for a relief run for 18 months. She told me why.

Rayner:
Well I go into the hospitals quite a lot and it's a half hour journey by taxi, then you've got the time that you're at the hospital waiting for your appointment, having your appointment, then you've got your journey time home - it's a long time for a dog to have to wait. So I just thought as part of raising awareness, it was the new hospital building project, that it would be good if they could incorporate a run, and it's a national first and we're hoping that other hospitals and big establishments will think it's a good idea and think about doing the same.

Peck:
And finally the RNIB is removing the £2.50 handling charge currently payable on all orders. From the 3rd April you'll only have to pay delivery charges for items that can't be delivered as articles for the blind. Any charges that are incurred will depend on the value of the goods you've ordered.

White:
Sunil Peck with a round up of news. And here's a piece of in-house news of our own. Totally blind marathon cyclist, climber and walker David Carrington-Porter will be Clare Balding's guide on this coming Friday's edition of Ramblings on Radio 4, when he takes her around some of his favourite Warwickshire countryside walks. That's Ramblings just after three on Friday afternoon.

Now In Touch is no stranger to new and sometimes innovative mobility aids. GPS, bat canes and indeed even horses as guides have all been put under our microscope over the years. Well this time it's the turn of dual purpose dogs. For the first time the Guide Dogs for the Blind Association has teamed up with Hearing Dogs to train dogs to act as the eyes and ears of deaf/blind people. Molly Dyson has had her dual purpose dog Erica for 10 months. As she explained to our reporter Mani Djazmi her dog not only alerts her to the door bell and a ringing phone but she also helps with the housework.

Dyson:
Erica's absolutely changed my life around completely. She alerts me to the door buzzer, the telephone, the cooker timer, she gets me up on a morning and she's the only one in the dual purpose dog what they've trained to pick up and fetch things for me because I've got a lot of arthritis and osteoporosis. So she's been trained to help me do daily tasks in the house.

Actuality:
Okay Erica get the washing out. Good girl.

Dyson:
She's got the washing for me.

Djazmi:
So she's just taking it out with her mouth isn't she?

Dyson:
You've just took it from her.

Djazmi:
Yes thank you very much Erica.

Dyson:
She gets the milk out, she gets tea bags out, pots out of the cupboard, plates, washing up liquid out, helps me make the bed. She picks money up when I drop it. She picks me purse up. Then I had a mini stroke the other week and she was there again and she stopped me from falling on the floor. I'd lost all the use down me left hand side and she helped me sit up against the tumble dryer. And then she went in the fridge and got the milk out and tea bags and pot out of the cupboard to make a cup of tea.

Djazmi:
Did she make the cuppa as well?

Dyson:
No yet, she hasn't got - she has actually put a tea bag in the pot for me, you know, but she hasn't actually made one yet.

Djazmi:
Just give me an impression of what it was like before Erica, I mean what couldn't you do then that you can do now?

Dyson:
When somebody comes to the door she'll come and alert me by touching and then guide me to where the door buzzer is going. So I couldn't hear the door buzzer before, so that's changed. When I need to get up in the night, which I get up quite a lot, she escorts me to the bathroom and helps me there. And like I say she helps me in everything in the bungalow that I have to do, you know, I don't need another person, I don't need other help because Erica does it.

Actuality:
Go and get me tablets Erica. Here she comes. She's thrown them at you - you eat. They're there anyway.

Actuality outside:
She's taking me round the corner and this is what I have problems with - I can't adjust how far the traffic is away and things, so this is where I've got to be very careful. Straight on Erica.

Djazmi:
I suppose that although Erica getting the milk and slippers and all that kind of things out of cupboards, as fun and unique as that is, this is the really serious bit, now this is the bit that really makes the difference.

Dyson:
Yes it is. It's all important but this is why she changes from a bubbly bubbly doggy, like you might, to a serious doggy in harness. She's constantly with me all of the time and she listens to what I say. She just makes me feel happy where before I were feeling really depressed and she makes me laugh and I never know what she's going to do next.

Actuality:
To the door Erica. To the door. And home safely.

White:
She does rather more than a lot of home helps I've heard of. That's Molly Dyson talking about Erica. And we've all been wondering here in the studio whether Erica can open a tin of dog food.

And finally, just a bit of news about next week's programme. Conducted by a voice you'll quickly recognise, even though this time he's not dissecting political opponents but being taught to carve up a marinaded salmon by master chef Anton Mosimann.

Blunkett:
Is that too big?

Mosimann:
It's a little bit too big, a bit smaller. But nicely done, well done.

Blunkett:
Well thank you for - because you're obviously a good teacher, because you have to compliment even when you get it wrong. [Talking over]

Mosimann:
You're doing very well.

Blunkett:
That's small enough but is it smaller enough?

Mosimann:
A little bit smaller.

Blunkett:
A little bit smaller still. It's quite difficult to run it ...

Mosimann:
That's perfect now, look at this - fantastic.

Blunkett:
Okay, that's - no that's more like the one you did isn't it. The difficulty for anyone who can't see is cutting straight because you're relying on feel whereas you're relying on look and when you've got a sharp knife, and this is very sharp, feeling is quite dangerous.

White:
Yes David Blunkett will be in this chair next week, polishing up his culinary skills. Be nice to him won't you. If you want more information about anything on tonight's programme you can call our action line on 0800 044 044. That's it from me Peter White, my producer Stevhen Williams and the rest of the team, goodbye.




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