Equalising care

Leading on from the mess I made assuming recently that if you stuck up for yourself and shouted loudly enough you got the help you needed. I was wondering what AUK should or maybe are doing about equalising care. It seems that asthma is a hiden postcode lottery. We hear a huge amount about other illnesses being a lottery yet I was completly ignorant about how hard it is for some and I thought being a suffer myself I knew the system. What is going wrong, how can we make sure that everyone gets the help they deserve as soon as possible? Is it down to funding, is it a problem of local cons thinking they can cope, of ignornace about how bad asthma can be and about how life challenging it is?

I am not expecting anyone to have answsers but it would be interesting to hear how others have coped, what they did to get treatment or what they tried that simply got them no-where, maybe this could be used a basis to lobby for ending of the asthma postcode lottery.

Bex

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Sorry if this is long but it has taken a major 'blip' and hindsight to make me take my asthma seriously.

I have had asthma (non allergic) for over 20 years with the occassional 'blip' but generally well controlled on a steroid inhaler with above average peak flows (mid to high 500s). I was used to seeing my grandmother having attacks when I was young so was never frightened by them and just assumed that that was how asthma was for some people. Also my mum and aunt have asthma so I've always accepted that it was just something in the family and dealt with any attacks with the minimum of fuss and without wanting to bother anyone as 'its only asthma'. My asthma reviews have always involved me going to see the doctor for a couple of minutes at most when I ran out of repeat prescriptions and saying yes everything is fine so they renew them for another cycle.

About 18 months ago I started to notice I was getting breathless at the slightest thing (even my mum was complaining that she was trying to breathe for me!) so eventually admitted defeat and went to see one of the doctors at the practice I go to who prescribed an add on. This seemed to help until last autumn when it started to creep up on me again and I started struggling with attacks several days a week and constant coughing.

It wasn't until I had 2 pretty bad attacks one night that I went back to see the doctor and was given pred and abs for a few days. Unfortunately my asthma crashed a few days after with my pfs down to about 100 so back to the doctors and on the pred for a few more days. When I went back to the doctors a week later my pfs were at about 350 and he told me we would now call that 'normal' for me even though it was down 200 on normal. I then started keeping a record of my pfs to try and prove to someone that it wasn't normal.

It wasn't until Jan/Feb this year that I started seeing the asthma nurse who took one look at the readings and was horrified. She immediately changed my meds and has been trying to help me get it back in control since then. After several tests and trying various things with only slight improvement she has put me onto seretide 500 and referred me to chest clinic but she thinks my asthma has probably been under treated for several years which has caused all my recent problems.

I've never been to hospital when having an attack (even when they lasted over an hour) but that is more because I didn't want to bother anyone but now looking back I realise how bad it got and there are several times just in the last few months that I probably should have called someone. Work have been great with letting me go for tests etc when I can only get appointments in work time but they also realise that I have been in on days that I really should have been at home or elsewhere.

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my assthma hda been giogn doown hill durign the lasst 3 yeears or so - i hda mentoined to my cons bouut reffereal to rbh btu nevre gto anywhhere - durign my marathhon staay lastt year i staammpde my feet and hda tempre tantrrums at the doocs on teh waard and poointde ouut to thme taht thye weeere sayign they couldn''t dischrge me coz i wassnt stabble enouhg to be at hoem btu taht i was cossting nhhs a hueg amouunt of monye to kep me in costa - in teh ennd thye saww sensee and decidded taht it wouuld be cheaapre to referr mee too rbh - taht and teh facct taht thye weere fed up wiht me askign vrey day about it and mkign big fuss etc.

It wass all bouut getign thme to admiit defeaat - coz thye r a uni hospittal and well knowwn and wel thouught of in med circcles.

My addvise to any1 haeving probs wiht theirr locla costa is to kep pestreign - u knnow ur ashtma beter than any dr - if u fel taht the treatmennt u r on is nto rihgt thne kep telign thme. clinicaal evidennce is importaant btu teh maain thinng is taht the drs treaat u as a whoiole persoon and nto juust the diseasse.

Sinnce i bin referred to rbh my depresssion hsa gto lto beter - i stil haev days whne i tink wot the poiint of kepign fightign btu i allso haev dayss whne i knnow taht theere is a reasson to figght. I haev bin gibven soem hpoe back to maybe haevign a slighhtlyy beter qulaitty of lief. Eveen if s/c soessn't workk foor me at leasst i knwo taht i haev tride it.

KEEEEP FIGHHTIGN

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I think to some degree it is a postcode lottery, but also a lottery within the local health authorities themselves! I have hadboth appauling and excellent care in the same health authority, dependant on who i was referred to, or had been in costa under. Equally, what constitutes good care for one person can be bad for another - this is evedent in postings on here about the brompton, where although many have had only good experiences, some have had bad. It is all very personal, whether the cons you are under has an interest in your sort of asthma, how you get on with the cons, or even if you get to see the cons, or get shipped from one reg/sho to another depending on rotations etc! I think if you find a cons that works for you then hang on to them for all its worth! Even if you have been referred to a so called expert - if you feel you are listened too and that the treatment is right for you than that is what counts - sometimes seeing an expert may only confuse things! Equally though, if you do know of someone you feel can help you (eg from the AUK boards) then speak to either your cons you are under at the mo, or your GP. I changed cons recently cos i didnt like the one i was under and felt he was disinterested, i spoke to the resp nurse covering for the asthma nurse at the mo (as that post is frozen die to cut backs - sod the patients!) and she suggested phoning the cons i wanted to swap to's secretary directly. As it was i ended up in costa before i could do that so asked the docs to change me when making my OPA! It is very difficult though, but if you feel you need to be seen sooner, it may be best to ask your GP to see if they can bring the appointment forward - mine has done this on a number of occasions. It is however very relient on good relationships between all parties, the patients and the various docs - as rusty rightfully says, it gets very hard when a doc wont admit defeat and refer to someone more learned!

Equally i think there is an issue of having lived with a condition for so long, and knowing your limits etc that that becomes the norm. Further more - the promice of a fix may be scarey - you have known nothing else in life - how do you cope with being ""normal""! A case in point is a teenage son of a friend who had severe epilepsy and had several major fits per day. He underwent a pioneering operation which effective stopped his fits, yet some months later he was still fitting. Tests showed that these were in fact sudo - fits - i.e subcounciously made up - he knew knothing else in life and was used to being the centre of his parents and brothers world, no one envisigage the psychological change becoming fit free would have on him, everyone assumed he would be happy to be mended! I am in no way insinuating this of anyone on here, but it is something to consider - how would being asthma free affect your life? or even symptom free? How would it affect how others treated you? Oooooh i feel some post doc research being worked up here - better get phd finished so i can start on it!

Baba

ps sorry for the essay - can we add it to Mia's marking pile? - hehehe

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Have to say, in my case, I can't complain.

From what I have read online for many moons now, the problem with 'postcode lottery' type of funding seems to be more at the availabilty of new drugs, and drug trial end of things, and namely with expensive drugs such as Xolair. Several of my friends have been put forward to trial this, but still to no avail as they are out of reach of the top hospitals which might otherwise be able to offer this drug to them. Several others have been so close to receiving it at their local NHS hospitals but then were turned down at the final hurdle due to lack of funds.

Lack of funding is a countrywide problem, not a problem specific to any particular postcode. But we must remember how lucky we are to have an NHS.

Would you want to pay $200 for an Accuhaler that lasts 15 days?

We moan and we groan, but we are actually spoilt for choice here and very often blind to our luxuries.

So here is my story:

As far as my Asthma-related care goes, I cannot fault my GP, PCT, local hospital, and luckily for me, top end RBH care. I have always been dealt with swiftly and as far as possible correctly by my local, it's just that they have not got the facilities to care for the speciailist kind of treatment that we difficult cases tend to need.

Every letter of referral has always been dealt with quickly, and only with the occasional bit of chasing up, and every prescription from hosiptal to GP has encountered no problems, no explanations, has been dealt with readily and without quibbling over the cost.

It made me laugh that during my last incarceration, the letter from the Dietician had been received by the GP and dealt with weeks before I was even released.

My only problems currently are pharmacists!

There seems to be a national shortage of Atrovent and Saline nebs, and no more Natural flavoured Calogen, so I have 9 bottles of strawberry to use up before I go insane and can demand something else.

I live in West London. Maybe things are done differently in London. I know many of you are in the home counties, or Wales or Devon, but still you seem to have been dealt with at Heartlands, or RBH once your local hospitals have thrown in the towel.

I used to live in deepest darkest Wiltshire, so I have experience of being 'out of London' so to speak, but I still received the same excellent care for my asthma from my utterly superbly efficient GP and even the little local cottage hospital who always looked after me before dispatching me off to somewhere like Swindon.

My advice is to take the time to have a calm and gentle chat with your GP at a time when you are well, to lay down the necessary guidelines for when you are not.

The words here are patience, understanding, and then of course, protocol.

And also, to put yourself in their shoes. They are not specialists. They can only ever know so much about the general diseases they treat. Your asthma nurse at your surgery is the next step, if your surgery does not have one, consider changing surgeries.

Equalising care, well, maybe. But I would think of it more as equalising our understanding of our illness and the differnces between us.

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All I can say is that Equal care would happen in an ideal world BUT the world aint ideal and it never will be !!