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The Snoring & Sleep Apnoea Forums

It's time to speak out

Share your experiences with CPAP, request help, find out the latest developments ....
Jackie2

It's time to speak out

Post by Jackie2 » Mon Sep 11, 2006 2:44 pm

Hi anyone reading this. I have been advised by a Registrar at the Sleep Unit (Bristol Royal Infirmary) to make more noise amongst ourselves and ask our MP's and Health Authorities (if funding for CPAP machines is low) to take SA more seriously . No one should have to buy their own equipment if a NHS patient. It is up to us all to make a stand and hopefully make them put in more funding for SA clinics. Please write a letter(s) if you are already receiving treatment and have a machine on the NHS to support others who are still waiting, and if you are like me still waiting, write to. Thank you

Tony The Busman

Post by Tony The Busman » Mon Sep 11, 2006 7:27 pm

Hi Jackie,

I don't know if you saw my post under "Letter to MP's" in the general sleep apnoea section of the forum. I know that SATA had a campaign to get people to write to their MP's and to NICE (National Institute for Clinical Excellence) to get them to include CPAP under their list of approved treatments.

I know that NICE responded that they would review the case sometime this year, so perhaps it is time to remind them that we are still here and write to them either via our MP's or direct to them. I am sure they will have a website where we can find contact details.

It really is imperative that we persuade NICE to include CPAP on their list of approved treatments as this then means that anyone who is clinically assessed as needing the treatment must be provided with it by the NHS.

I also know that SASA is backing a campaign by an MSP to raise awareness of the problem in the Scottish Parliament and to make the Scottish Executive tackle the problem, so there is a lot happening out there.

I think we just have to keep pushing, as it looks as though the barriers may just be beginning to give way.

Stuart

NICE

Post by Stuart » Mon Sep 11, 2006 7:40 pm

Just had a look and search for guidance under Sleep Apnoea and the following link came up

http://www.nice.org.uk/page.aspx?o=350198

Not sure how we can chase them up on this though.

EDIT = their email address is nice@nice.org.uk

Let's all contact them and ask them to ensure CPAP is added to their list of approved treatments.

Stuart
Last edited by Stuart on Mon Sep 11, 2006 7:47 pm, edited 1 time in total.

Jackie2

It's time to speak out

Post by Jackie2 » Mon Sep 11, 2006 7:47 pm

Hi Tony the Busman. Thank you for replying to my message and for the information. You would appear to be luckier in Scotland than us in England and I hope something is forthcoming. I will look into this information. I will be writing to my MP and Chair of the Hospital Board telling them to take SA seriously and to put more funding into it. It's not as if we are asking for ongoing expensive treatment just a little machine to give us back our lives and without waiting a long time for it!! I started this journey last Novemeber and after tests and waiting to see Consultants and one month's CPAP trial still no nearer to my own. I am keeping my fingers crossed that it will be next month. Jackie

Jackie2

It's time to speak out.

Post by Jackie2 » Mon Sep 11, 2006 7:55 pm

Thank you Stuart for that information. I have sent an email to ww.nice.org telling them what you have suggested! Jackie

Stuart

Post by Stuart » Mon Sep 11, 2006 7:59 pm

From NICE Website


Aim of technology appraisals

NICE is asked to look at particular drugs and devices when the availability of the drug or device varies across the country. This may be because of different local prescribing or funding policies, or because there is confusion or uncertainty over its value. Our advice ends the uncertainty and helps to standardise access to healthcare across the country.

The NHS is legally obliged to fund and resource medicines and treatments recommended by NICE's technology appraisals.


This is EXACTLY what we are needing!

I suggest telling them either

Problems you are facing getting treatment

or if being treated

How successful it is for you and the difference it makes to your life.


The more of us who write the more likely they are to do something!

Jackie2

It's time to speak out

Post by Jackie2 » Mon Sep 11, 2006 8:10 pm

Stuart. Again thanks for taking the time to tell me this. I have sent an email telling them of my problems and about my local health authorities lack of funds in this area. My Consultant got really heated about this and said we must all write and make waves so that they do something about the situation nationally. I hope others who look at this topic may just take the time to write or email to. They would have to take notice in the end, so come on all your SA guys and gals DO SOMETHING ABOUJT IT JUST DON'T MOAN!!

Tony The Busman

Post by Tony The Busman » Mon Sep 11, 2006 8:16 pm

Hi,

I just had a look on the link posted by Stuart and there is a chance for members of the public to reply to any consultation documents that they produce or to get involved by becoming a member of their patient councils or in other ways (the website has more details)

At the moment they have not yet issued any consultation documents, but I would suggest that we keep a close eye on their website for future posts.

Perhaps Dan could provide us with a link to this website on the main home page?

Jackie2

Post by Jackie2 » Mon Sep 11, 2006 8:20 pm

Sound advice and maybe Dan could help with any information. Will keep an eye on this. Jackie

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dan
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Post by dan » Tue Sep 12, 2006 10:43 am

Hi everyone. We have just contacted NICE to see what the current situation is. Once we have all the information, I'll get something sorted out.
Dan Kew
British Snoring & Sleep Apnoea Association

01737 245638
www.britishsnoring.co.uk
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Stuart

Any responses?

Post by Stuart » Wed Sep 13, 2006 11:17 pm

Just wondering if anyone who contact NICE has even had an acknowledgement response as yet?

Stuart

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dan
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Post by dan » Thu Sep 14, 2006 10:40 am

NICE responded with the following :

----------------------------------------------------------------------------

The Institute has been asked to develop guidance for the NHS on the use of CPAP for sleep apnoea.

As the appraisal had only been referred to NICE on the 25th August, the expected date for publication has not yet been set. This date is provisional anyhow as the process we follow allows stakeholders to appeal if they feel that guidance is perverse, if NICE has not followed the process or if NICE has exceeded its powers. Technology appraisals can take up to 2 years once a scope has been agreed. As more information comes to hand it will be placed on the website at this address, http://www.nice.org.uk/page.aspx?o=350198.

----------------------------------------------------------------------------
Dan Kew
British Snoring & Sleep Apnoea Association

01737 245638
www.britishsnoring.co.uk
Image Image Image

Jackie2

It's about time

Post by Jackie2 » Thu Sep 14, 2006 12:15 pm

I have had an acknowledgement from NICE and had the same response as Dan did! I have written to the Chief Executive of my local hospital and also sent a copy of the letter to my MP, making them aware of the situation re. SA and how some authorities do not put in the funding ie. my own.

BigEars

Post by BigEars » Thu Sep 14, 2006 3:02 pm

www.sign.ac.uk/pdf/qrg73.pdf

Also check out already existing advice from the above scottish organisation.

Jackie2

It's time to

Post by Jackie2 » Tue Sep 19, 2006 1:04 pm

Hi. Have had a reply from the Chief Excutive of Health Board saying that my complaints/comments will be investigated. Also had a reply from my MP.(Dr. D. Naysmith-Bristol North West). In general his view is that although more funding has gone into the NHS since the present Government came into power, it is still not possible to afford every possible treatment regardless of the severity of the problem. He then goes on to say that the Exceptional Funding Panel in my area considers applications for CPAP machines on the serverity of the problem and whilst this may not be ideal this seems to him to be the only way resources can be fairly allocated. He hopes the panel will find in my favour. If not let him know and he would be happy to write a letter on my behalf if my GP or Consultant is also prepared to offer support. Well there you go!!! Now to wait and see - panel meet sometime next month. Talk about a lottery. Jackie

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