Post code lottery

[skischool]

Hi there,

I have previously posted on the inadequacies of the NHS and its postcode lottery in terms of service.

Can anybody beat this,GP appointment early February confirms low SATs on air at rest of below 90% and accepted self diagnosis of SATs on exertion of levels as low as mid 70,s. Original COPD diagnosis by respitory consultant more than 12 years ago.Spirometry testing 6 months ago indicated very low fev levels and much diminished airway movement/transfer in lower lungs. Requested urgent or prioritized referral to Respitory consultant ,Result appointment late July.

Recent CB Gasses taken at home by long term conditions team indicated raised PH levels and non compensatory metabolic alkalosis suggesting need for O 2 therapy assessment for either LTOR or Ambulatory oxygen therapy which I have requested given low SATs on exertion. Result O 2 therapy assessment late August.

High blood pressure 24 hr monitoring requested 8 weeks ago,since been given meds which have stabilized BP thankfully but equipment was not available to do monitoring and when it did become available yesterday it was knackered with flat battery,dirty frayed cuff and also I was told they can no longer monitor 24 hr and only during the day and would I care to do some home readings.I am glad that i didn,t present with a Heart attack as i am sure Argos are right out of defibulators at the moment.

Needless to say I have now purchased my own portable concentrator for use on shopping/gardening or any other activity which lower my SATs,of course this is totally frowned upon because it is not prescribed though I think I have done enough research in respitory diseases that I can use this with due diligence and common sense taking into account over saturation and CO 2 retention et al..Before I am seriously moderated I will add the disclaimer that I would in no way recommend either self diagnosis and or self treatment. Sometimes frustration leads you to try to take control of a situation.

Sorry for this long moan and I should have known better from my local Trust which managed to finish of my wife in 3 months. but I get so frustrated seeing the good side of the NHS and the excellent treatment that a lot of people within this site have and are receiving..

On a lighter note next week I will be mainly doing routine bypass surgery.occassional Frontal lobotomy's and run of the mill home kidney transplants.

Best wishes to all.

[Billiejean_2]

Hi Ski School, your post made me laugh -at the end / but the rest was a sad litany of neglect. I don't know where you live but it does seem like it's scraping the bottom of the barrel in terms of post code lottery. Good for you for taking matters into your own hands re the 02 portable concentrator.

Hope the routine bypass goes well :))

[skischool in reply to Billiejean_2]

billiejeane thank you for your support.i think only the people on this forum can appreciate the frustrations and anger we all go through from time to time,bascically you have to have it to feel it.sometimes even our family and friends if we have them are not on the same wavelength.XX

[Billiejean_2 in reply to skischool]

That's true SS and that's why this forum is such a lifesaver sometimes. The weird thing about lung disease is how much you can keep it hidden and even family members sometimes have no idea of the level or severity of our conditions. Thank goodness we can come on here and have a good rant.

[katieoxo60]

Hi Skischool, well you raised a titter in my house. I appreciate what you are saying I find the NHS is a hit and miss service for many of us. Agree with you DIY is frowned on as is self diagnosis, however self care does releive the pressure on hard pressed services. It as to be appreciated that many of us do not attend hospital to spite chronic illness, self treat minor ailments like advised but still often have to wait a long time for treatment when things go wrong and can have problems convincing people that even the most stoic have to seek help when in health crisis as there is still one thing we can't DIY and that is doctors treatment and prescriptions. And in this country it all falls to the NHS even if you want a private referral or have private insurance,referrals still need NHS GP consent. Often it is not the treatment we can't get, just the appointment to be assessed for it. It is frustrating have a good day, take care and hope the post code lottery gets better after the current election, but don't hold your breath.

[Hidden]

Hi it's not good is it? I self medicate too but in a much smaller way than you do. In an effort to avoid deadly doctors and an increasingly creaky NHS sometimes use my ab's from my rescue pack eg if I have an abscess on my tooth etc. I decide when and if to up or lessen my inhalers too.

I think the way things are going we will all have to manage completely on our own one day. Unless you can afford private medical insurance that is. Terrible.

[helenlw7 in reply to Hidden]

I too adjust my prescribed medication according to my needs. I used my rescue abs when I got an infection in my foot and couldn't get a Drs appointment. I did tell my gp what I'd done. He's been my gp for about 20 years and knows that I understand my body well. I also adjust my inhalers between one and two puffs twice a day according to how my lungs are.

[lKeith]

skischool,

Hi read your post,would like to know how and where you got your concentrator from as most of those advertised as being NHS approved seem to require medical referencing.

My GP is reluctant to refer me to any specialist for treatment even if I go our side of the NHS or private. I'm too old for a transplant but there are other things out there that would relieve the situation. Can you give me any pinters please.

Keith

[skischool in reply to lKeith]

ikeith.My concentrator was posted for sale on this site and was an Inogenone g3 which is a very well respected portable device,one of the higher standard models and had been properly serviced and is still under warranty.Decent portable concentrators are quite expensive but there is no substitute for equipment that is certified and fit for purpose.Amongst the leading dealers in the UK are a company called Intermedical who i believe are based in Kent And another in the Manchester area is PureO2.Stone on this forum is a whizz on IT and has a fountain of medical knowledge and i am sue if you asked him nicely he could pop on some links for you.It is true that respectable dealers will not sell equipment to you unless you have a prescription from your respitory team/G.p and i would suggest that you try to follow that route.To some i may seem like a bit of a Maverick but i can assure you that i have done an enormous amount of research into Respitory diseases and my own particular condition and taken into account previous gas analasis and other spirometry testing results in order to ascertain that i will not harm myself.But i must repeat that i do not advise others to follow my route untill both their GP and Consultants have failed them.If neccassary in your case i would ask for a 2nd opinion.regards and best wished for the future

[lKeith in reply to skischool]

skischool,

Thank you for such an informative response especially with a contact of Stone. You seem to have done a large amount of research, perhaps in your research you have found treatments that will improve the quality of life around severe emphysema? I have always been very active and now find that I can do nothing that requires effort, it's driving me mad and my partner suffers my frustration. Any hints of your own?

Keith

[skischool in reply to lKeith]

Kieth,

There is lots of information that can be of help to you you could start with this very organisation blf.org.uk/support-for-you which has a section on COPD but encompasses Emphysema within its framework.I am not convinced that both conditions should be dealt with as if they are both the same but the medical tradition has been to group them together into an Umbrella group.Basically the world is your oyster when it comes to info,some of it very usefull and informative and some of it utter garbage.Probably just communicating with others in this group who have the same lung condition and seeing how they manage their conditions is the best guidline.

Do work together with your partner to try to live as fulfilling a life as possible,challenge your condition and together i am sure you will overcome your frustrations.Good luck to both of you.Mike

[lKeith in reply to skischool]

skischool.

Mike, so very grateful for your info & help, will endeavour to cominucate with Stone and use the link you sent, will also keep the contact within the group on this forum. Am waiting for one such person to get back from the states to check on him, his condition and the treatment he has had for better or worse.

Thanks again

Keith

[warwickstag]

There is no doubt that the NHS is in need of critical care and is dying a death of a 1000 cuts, but we have the chance on Thursday to halt this decline. Don't waste your vote.

[skischool]

i know who i am voting for and i don,t care if they are not inclined to push the red button and destroy whats left of the planet.

[skischool]

Whoops i forgot to be PC here and mention that there are several other political organisations who will be contesting the elections as they often refer to when introducing a party political broadcast on the telly.You takes your choice accordingly.xx

[Poohpoohmad]

I have been a member of this forum a mere few weeks but learnt so much.

It saddens me that you are left to DIY your condition but totally agree the needs meet the reasons.

I bought an ox sat and found my SATs dip below 70's on exertion and low 90's at rest. I found the reliever truly works.

On the one hand am happy l now understand why l get pains in my lungs on exertion but on the other hand would've been much for a professional to have found this.

Onwards and upwards.