Improving NHS allergy services - NASG website

Just alerting forum members affected by allergies/with affected family members to the National Allergy Strategy Group's (NASG) website, which is live today - nasguk.org/index.html . The NASG is an alliance of medical charities, professional associations etc which campaigns to improve NHS care at all levels for allergy-related conditions.

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Improving NHS Allergy Services petition now on No. 10 website

petitions.number10.gov.uk/A...

The NASG have set up a petition on the No. 10 website as part of their campaign for better NHS allergy care. Please pass this on to any interested contacts

tx

Claire

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signed

I have just signed up to this petition. i do beleave there should be more done with people that suffer from allergys. i have just been told that i am getting the new treatment for allergy asthma called XOLAIR, have first treatment on 2nd december. But its 50/50 wheather it works, as it can be life changing for some people but some people it doesnt work for.

There has to be more done for people living with allergys!

Katie

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A critical area for improvement...

I am very pleased to see this website up - my son's allergies have had a major impact on his quality of life and this combined with his asthma is a constant struggle. The impact on the rest of my family is also considerable, so I am very keen to see the level of service provided in this area improved significantly from the patchy support that is currently experienced. Looking forward to this initiative being opened up for greater input from all stakeholders.

David Supple

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making sure your name appears on the No. 10 petition

In order for your name to appear on the No. 10 petition, you will be sent an email from the site which you need to open and then click on the link enclosed. Emails from the No. 10 site can end up in spam filters, so if you have signed and your name hasn't appeared, check your spam filter for the No. 10 email.

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if you still can't see your name on No. 10 site...

...you might need to clear your browser cache if using Internet explorer. Select 'tools' from top bar, then 'internet options', then 'delete' and then 'temporary files'. There's a glitch on the site which tells your computer to retrieve from the browser cache rather than look at the live page.

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thanks to all who have signed, getting near 500 now. We need lots of signatures so keep circulating to friends and colleagues,

tx

Claire

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worrying RCP press release

""...some specialties [which} have contracted – geriatric medicine -1.6%, dermatology - -0.2%, and worryingly -7.7% in allergy, an already small specialty which has lost two posts in England, there being no allergy specialists in Scotland and Wales. Other consultants treating patients with allergy include dermatologists, respiratory physicians, and immunologists. ..."" bit.ly/6A18rc

From Royal College of Physicians press release 25/11/09. Please all those affected sign the petition & circulate, put link on your Facebook page etc. We need lots of signatures!

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NASG now on Facebook - with link to petition

For those on Facebook, the National Allergy Strategy Group now has a Facebook page at facebook.com/home.php?#/pag... f [I've added space between last 2 letters], so call by, write on the wall, become a fan and whatever else the young (and not so young) folk do these days!

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Something that was discussed yesterday was that all asthma patients are allergy tested, and is going in the consultation document. But one lady on my table was talking about a scheme that is still done in Europe, but no longer here, was the NHS use to do allergy vaccinations, and wondering if that is a way forward to bring those back. Obviously the reason it was withdrawn in the UK was some do have allergic reactions and so the vaccination procedures would have to be carried out in hospitals like Europe rather than GP surgeries. She used her son as an example, he had asthma as a child, then was given the vaccinations at around 9, and is now mid 40's and no asthma, no medications required, and is fit and active. It won't work for everyone, but those with allergy derived asthma, it sounds a plausible idea.

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I had the desensitizing injections when I was around 9 years old, and look at me, no different, but my current respiratory consultant is talking about doing something similar before the hayfever season starts next year.

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Something that made me pleased today: our PCT is running a 6-month trial of a nurse-lead asthma & allergy community clinic. Fingers crossed the pilot is successful and the service is re-commisioned

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That's good news Cathbear. Something I've come across quite a bit is lack of awareness of the necessity for good asthma control in a patient who also has food allergy, as this can be a higher risk category. Hopefully having health professionals in the community with appropriate training will spread this message. I was talking recently to a specialist nurse from a hospital allergy dept. and she says this is a message she has to drive home continually, especially with teenagers.

As woody-som says, things like allergen immunotherapy will not be for everybody with asthma (esp given the lack of facilities in UK able to provide it!) but there is evidence that it can be useful in selected patients and also of its role in preventing allergic rhinitis progressing to asthma. Equally, there seems to be consensus that not all patients with asthma need an allergy diagnosis, but it might be worth considering in certain categories, e.g. children with the three atopic conditons. The difficulty at the moment is getting access to such care.

Finally, for anybody with an epi-pen, the Anaphylaxis Campaign issued a reminder yesterday to check expiry dates as it appears a lot of these are due to expire in late Dec/Jan:

""...The Anaphylaxis Campaign is urging the 210,000 British people who carry these injectors to check their expiry date urgently if they have not done so.

Most pens used in the UK are US-made Epipens and tend to arrive in one large batch with the same expiry date.

But the numbers about to expire are unprecedented, the charity says. ...""

BBC © MMIX - news.bbc.co.uk/1/hi/health/...

Perhaps I should put this in a separate post as I think a few people on here have them.

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The allergy testing for all those newly diagnosed was coming from the top, and not anything we suggested, but perhaps it's been picked up as an important step, despite very few thought it was an essential. Most people know they have an allergy to something, even if they're not sure what, and then test, or other select groups who either have difficulties in maintaining control or as claireOB has already said, certain categories of patient.

Katina, you are not alone in having the desensitizing injections, and them not working. The lady opposite me had a similar story, so even in the small number in our group that day, two totally different outcomes. As with so many things in asthma, there's not a one size fits all solution....