NHS Information

[Caterpillar]

When I was first suspected of having sleep apnea, it took 14 months for me to get a sleep assessment and then a wait of two months for the results and then was told I had to wait 6 months for my machine,so I ended up purchasing a machine, I did detail this in my "introduction part of the forums" please read to save going into detail here, but since last September 2010 I have been trying to find out what the local heath trusts policy is on treating Sleep Apnea and if they are within the guidelines.

I live in North Wales and come under the Betsi Cadwaladr Health Trust at Wrexham, Firstly I wrote to my local Assembly Member (AM) explaining what I had been through etc, and told him I was not happy at having to spend £800 on a machine, he forwarded this to the Health Minister for Wales, I eventually had a reply from the health minister basically saying hard luck and it was my option to purchase a machine and I should have waited for one off the NHS ( I had asked for re-inbursment for the purchase of my machine) but in respect of guidelines she was passing my complaint to the Chief Executive of the Betsi Cadwaladr Trust.

I did not here anything from the trust so in November I again wrote direct to them asking why I had not had a response, well at long last I have just received a reply and thought I would share this with you.

I have not received any info on what the trusts policy is or if they are within guide lines, but it seems that they are now looking to employ an additional nurse for the sleep clinic (currently only two brilliant nurses Helen and Lisa) so they reckon that the additional nurse will reduce the times you wait for an appointment with the nurses, currently they state a waiting time of 6-8 weeks if you need to see a nurse about a problem.

In respect of the waiting time for a sleep assessment they state that they can confirm a delay in the service at the moment as they are having 70-100 GP referrals each month, (in September I was told that they had approx 320 waiting for assessment) so what that number is now ?? and they state that they have clinical capacity for 16 new sleep assessments per week. (They do not state how many they are actually doing).
They state that they currently have 71 patients at Wrexham waiting to be put on an APAP machine for a weeks assessment prior to being given a CPAP machine and currently they assess 8 people a fortnight so 4 per week.(so even now it is eighteen weeks +)

I also raised a point about testing masks and suggested that they could do with a room with a bed to use, and their reply is " It is deemed acceptable to fit CPAP masks with the patients sitting in the upright position in a chair. There are some clinical situations whereby some sleep patients require the tilting of the head backwards whilst sitting in the chair which then provides the sleep nurse with the accuracy of the fitting of the mask/seal.During the fitting if poor contact is noticed then they may take the patient to the ENT ward. In summary not all sleep assessment clinic patients are required to lie down for mask fitting."

AS i said in the start I still have not had the Trusts guidelines or the NICE guidelines but are still chasing.

Hope you find the information interesting and it would be interesting to see how this compares in your individual area's

Ron

[Barely Awake]

Back when I was diagnosed CPAP had not yet been adopted by NICE, which is one reason why I joined The Sleep Apnoea Trust as I believe the only way to get recognition and understanding of our common problems is for folk to club together and get a voice.

Now that CPAP is adopted by NICE, and because OSA is becoming increasingly known among the public and there are huge increases in GP referrals, us hoseheads need SAT more than ever to get the treatment and kit that suits us as a collection of individuals.

The information you have passed on here Ron may or may not be indicative of a nationwide situation, but perhaps it is important and should be forwarded to SAT. It is only £15 a year to join, and it is worth it for the annual conference alone (although you do have to pay for the ticket). A few of us on here went last year.

http://www.sleep-apnoea-trust.org/

[carolT]

When I was first suspected of having sleep apnea, it took 14 months for me to get a sleep assessment and then a wait of two months for the results and then was told I had to wait 6 months for my machine,so I ended up purchasing a machine, I did detail this in my "introduction part of the forums" please read to save going into detail here, but since last September 2010 I have been trying to find out what the local heath trusts policy is on treating Sleep Apnea and if they are within the guidelines.

I live in North Wales and come under the Betsi Cadwaladr Health Trust at Wrexham, Firstly I wrote to my local Assembly Member (AM) explaining what I had been through etc, and told him I was not happy at having to spend £800 on a machine, he forwarded this to the Health Minister for Wales, I eventually had a reply from the health minister basically saying hard luck and it was my option to purchase a machine and I should have waited for one off the NHS ( I had asked for re-inbursment for the purchase of my machine) but in respect of guidelines she was passing my complaint to the Chief Executive of the Betsi Cadwaladr Trust.

I did not here anything from the trust so in November I again wrote direct to them asking why I had not had a response, well at long last I have just received a reply and thought I would share this with you.

I have not received any info on what the trusts policy is or if they are within guide lines, but it seems that they are now looking to employ an additional nurse for the sleep clinic (currently only two brilliant nurses Helen and Lisa) so they reckon that the additional nurse will reduce the times you wait for an appointment with the nurses, currently they state a waiting time of 6-8 weeks if you need to see a nurse about a problem.

In respect of the waiting time for a sleep assessment they state that they can confirm a delay in the service at the moment as they are having 70-100 GP referrals each month, (in September I was told that they had approx 320 waiting for assessment) so what that number is now ?? and they state that they have clinical capacity for 16 new sleep assessments per week. (They do not state how many they are actually doing).
They state that they currently have 71 patients at Wrexham waiting to be put on an APAP machine for a weeks assessment prior to being given a CPAP machine and currently they assess 8 people a fortnight so 4 per week.(so even now it is eighteen weeks +)

I also raised a point about testing masks and suggested that they could do with a room with a bed to use, and their reply is " It is deemed acceptable to fit CPAP masks with the patients sitting in the upright position in a chair. There are some clinical situations whereby some sleep patients require the tilting of the head backwards whilst sitting in the chair which then provides the sleep nurse with the accuracy of the fitting of the mask/seal.During the fitting if poor contact is noticed then they may take the patient to the ENT ward. In summary not all sleep assessment clinic patients are required to lie down for mask fitting."

AS i said in the start I still have not had the Trusts guidelines or the NICE guidelines but are still chasing.

Hope you find the information interesting and it would be interesting to see how this compares in your individual area's

Ron

I am under Southampton for my treatment which i am relieved to say went considerably quicker than your own experience which I can only imagine must have been very frustrating - especially if you were not allowed to drive. However what I find odd about the whole system is that you are assessed after a 1 night stay in hospital , given £100's pounds worth of equipment BUT are not then asked to do another over-night stay so that they can a) check that the sleep apnea is reduced or b) to iron out any fitting problems with the mask .

[Caterpillar]

Barely Awake, thanks for the feed back, I will have a look at the Sleep Apnea Trust.
I think you can tell by my post that I am very passionate about our problems and as you say the more information that is made public only helps to highlight how our illness is poorly funded and unless we speak out about it and fetch it to the front of peoples minds we will not get the research and funding for more kit as you say.

Ron