COPD, NICE, the NHS and US!

[Phil40]

Hi, I have been visiting this forum for a while to get some other input and help with caring for my 80 year old Mum who has severe COPD.

I have grown angry and resentful over the last year since my Mum finally agreed to let me attend medical appointments with her because nothing seemed to be addressed regardless of her obviously worsening condition. There was pretty much no care in place, apart from increasingly regular repeated prescriptions of her emergency meds and an oxygen condenser that she was told to bring down to Bournemouth with her when she moved from Harrow, by the health authority in Harrow who dumped it at her house there after her second hospitalisation. Without a care plan or instructions.

The fact my Mum had an unregulated and unmonitored prescription medicine (the oxygen) in her home here and had never had any blood tests or guidance really on what to do, went unnoticed by her new GP for a year and a half after moving, despite her telling them on the new patient form that she had the oxygen from day 1 and having been seen by the alleged 'Respiratory Nurse' there. Who wrote in Mums notes that Mum was on Short Burst Oxygen Therapy. Not Long Term Oxygen Therapy with no management.

So over the past year I have done a lot of late night reading to try and find out what we were supposed to do.

And you know what? We were supposed to be told what to do because there are very clear guidelines about this by the National Institute for Clinical Excellence or NICE.

Now this does not have to be followed (it's a Guide after all) but really it should be. And here's why. Because GPs etc do not know this stuff well because there is a lot of stuff they have to remember like how many arms we have and what time the golf course is quiet.

So NICE, and they are nice, work out through a whole load of Very Clever nice People like other doctors and researchers and people with BSc and other letters after their names the best things to do (Clinical Excellence being the clue in the name) to treat COPD. They get people who can write proper and spell things like 'dyspnoea' to well, write every thing down so when the doctor or nurse or 'health professional ' has to be in the surgery for instance and see me, my mum or maybe you, they can read, because they all can I believe, the Guidelines of CLINICAL EXCELLENCE to treat me, my Mum or maybe you.

And then they can pretend they know what they are doing and pat each other on the back at the golf course when they are feeling very proud of how they have helped the poor mortals in their care to struggle through our existence for another day.

Make sense so far? They have a guide. It's here:

nice.org.uk/guidance

Type that in your computer and I know you all can because you are reading this. Aha!

Then search for COPD.

Find the guidance and read it slowly and bit by bit. It does start to make sense because you know what it is about.

Then you can see what your doctor or community matron (band 7 £31 to £41 thousand a year apparently) or anyone else involved in your struggle to be OK for another day is supposed to be doing.

Now, Very Clever People get upset sometimes when they realise that we may have dared look at THEIR GUIDELINES and they get VERY CROSS.

So type this into your computer too:

gov.uk

Then search for 'NHS CHARTER'.

And read that. The government has to write that so that people who are not VERY CLEVER PEOPLE like me can understand it.

And the NHS Charter does not say that I can be treated like a moron, dismissed, have medication stopped or changed out of hand and made to feel I am a burden. It does not say I should be grateful for the 5 minutes I get and never dare to speak up and question what is going on.

It says that the NHS work to help us stay healthy, it says we are to be treated with respect and in the best manner possible. It says that patients and carers should understand the treatment, the condition and have the right to challenge what we do not think is right. It says that the NHS staff should all work together for our benefit to give us the best patient care possible.

So I hope that all made sense, it has taken me a year to unpick the maze of incompetence and apathy towards my Mums care and I thought that she was the odd one out; slipped through the cracks in the system.

Guess what? I now know that isn't really true. And so do you.

So you can save yourself that year I spent staying awake on the computer and go straight to those sites and read about how things are supposed to be.

If you want to. I wish everyone the very best for the day. Well, except some Very CLEVER PEOPLE I know who I hope have their golf spoiled by the rain.

[Carnival567]

You have just reinforced my view that, sadly, you have to be well to be ill!

[mrsmummy]

I feel your frustration and pain.

[Phil40 in reply to mrsmummy]

Thanks. I didn't set out to write a novel then. I have come to realise of late how very angry I am at how Mum and all the vulnerable and ill people of her generation are so badly treated when they are in the least likely position to fight their own corner. And I think it is not the way her generation is anyway.

But today I am taking her, her granddaughter and great grandsons to lunch because she has been stable for a few days and she loves seeing them.

Sick of me obviously and I am not surprised. I don't like being with me that much haha

[mrsmummy in reply to Phil40]

There isn't much I can say here but I have similar experiences. Enjoy your day.

[MilkofMagnesia in reply to mrsmummy]

I think you're wonderful Phil40. I truly wish we all had such caring child/children.

[newlands]

I feel your frustration and pain ,I am 75 ,and last year thought I had found a wonderful consultant ,but she doesn't need too see me anymore ,my matron has retired,I struggle everyday and try my best ,my youngest daughter is my main carer she works and is not well herself (powers that be can't decide what's wrong with her she has been coughing for over 12months and has muscle and tendon problems and only had one blood test) where do we go from here .My 8th great grandchild is expected in Dec I worry for its future health care

Take care

Dorothy

[Hidden]

quite so Phil40. Now type in Bronchiectasis and triple the COPD frustration. We don't have respiratory nurses because they can't pronounce it.

[Phil40 in reply to Hidden]

I am not at all surprised I am afraid. I am not optimistic about any care anywhere if I were to succumb to anything as yourself. Anyone who is living with prolonged health problems has my respect and good wishes.

[MilkofMagnesia in reply to Hidden]

I have severe COPD and have just been diagnosed with bronchiectasis. Nobody has even bothered to explain this diagnosis with me but I have looked it up myself. The community matrons seem to resent all my questioning and dismiss a lot of them. I am a retired Sectretary and since becoming very poorly I had great faith in the NHS. After several bouts of pneumonia, recurrent chest infections, regular hospital admissions this has all changed. I have been in three different hospitals and have ACQUIRED another infection from what I was admitted with in all of the three,.

September 30 2013 I was admitted to Trafford General Hospital with community acquired pneumonia. I was in intensive care for two weeks, high dependency for one week and on the respiratory ward for two weeks. I was 'do not resuscitate' and my family were on the verge of having 'the last rites' for me. Early November I was discharged (although my sputum was the colour of pea soup). I collapsed half way up the stairs at home.

My sister lives in Wales and after me being at home in Manchester for two days, not able to look after myself, she came to pick me up to go to her home for me to recuperate for two weeks. Whilst I was in Wales I had to have the practice nurse come out to see me, she listened to my chest and said she could hear something 'brewing' in there. December 9, 2013, I had a follow up apppointment and was admitted immediately as my x-ray had changed quite dramatically from the last one I had had as an inpatient in October. Two weeks later on Christmas Eve, after IV and oral antibiotics and I was discharged after being told that all the consultants and doctors etc were scratching their heads about what had caused all the nodules on my lungs. Follow up in January 2014 saw me being admitted again by which time the microbiologists had identified the super bug that I had. Serratia Marcescens, (Regardless of the source or reservoir, the predominant mode of spread of S. marcescens is thought to be hand-to-hand transmission by hospital personnel (23, 68). antimicrobe.org). I was admitted again for three weeks and was given a different IV antibiotic, Tazocin.

I have since had too many chest infections to mention but each time I have been admitted to hospital, unfortunately not to the one where my consultant is based but first to Manchester Royal Infirmary, because Trafford General no longer has an open ICU, although they had only just spent millions doing it up. In MRI, I was placed in a cohort ward after a few days because I had tested positive for CPE, Carbapenem-resistant Enterobacteriaceae (CRE) or carbapenemase-producing Enterobacteriaceae (CPE) are Gram-negative bacteria that are resistant to the carbapenem class of antibiotics, considered the drugs of last resort for such infections. This was a fantastic selection of patients with all illnesses with CPE, and not a clean ward at all!

I have since, in the ensuing three years been admitted again to MRI where In October 2016, I went to Crete with my son and guess what, took ill on the flight home and paramedics boarded the plane when we landed, taken to Wythenshawe Hospital with pneumonia yet again, albeit community acquired pneumonia this time! In there for three days on iV ab's and discharged with oral ab's. March 1 to March 22, 2017, three weeks Manchester Royal Infirmary, this is the time I didn't test positive for CPE but tested positive for MRSA.

Since March, up until now, September 2017, (almost four years since I first became ill), I have managed to stay out of hospital. That's why we have community matrons, pendant alarms, nebuliser, rescue packs at home so we don't have to go back into hospital because invariably i go in with one infection and end up contracting another.

I have had super bugs many times. Serratia Marsescens Klebsiella pneumoniae, Morexella Catarrhlis and I just can't remember off the top of my head another one. I seem to keep getting repeat Klebsiella and Morexella. I didn't even know that I'd got bronchiectasis until I saw my last clinic letter from August!

Anyway, my ex-husband has just turned up (I'm sure he can smell death). lol ...

to be cntd;

[Phil40 in reply to MilkofMagnesia]

Wow that is quite a history you have there. That's exactly the reason I am not a big fan of going into hospital. Hope you continue to stay out of them for a long time x

[1947Mags]

Oh how I sympathies and understand I have had COPD for about 10 years I am now 70 years old and have come to the conclusion that GP's Consultants etc have no understanding or even care I sometime feel as though they just want me to go away. I have had one chest infection after another since February. Sputum tests sometimes show 2 bugs, here I am again on more antibiotics and steroids. No real treatment or testing just keep getting told give it another week and it may clear up. I saw a different Dr this time who did seem to be more sympathetic he changed an inhaler and asked me to take a spirometer test 4 weeks after starting the new inhaler, that is new as I haven't had one for a few years due to always being ill. I have requested a referral to our local lung clinic that falls on deaf ears. Ah well lets see what this latest course of antibiotics, steroids and the new inhaler do. Love to all who are suffering or caring for someone they love.

[Hidden in reply to 1947Mags]

You need a proper diagnosis as your symptoms are similar to those of bronchiectasis. Insist on a refetral to a bronch specialist or at least to a lung clinic where they will do a ct scan and know what they are looking at.

Dont ask, insist and do not take no for an answer. Its your health and they are your lungs, not theirs

[Phil40 in reply to 1947Mags]

I hope you feel better. Thanks for your reply, thoughts are with you x

[Damon1864 Volunteer]

I know just how you feel, thanks for the linkxx

[cosykitty]

OMG Phil, I am utterly devastated reading your post. So much so I cannot write a full response as I am so upset. If you read back over some of my posts you'll see I know your struggle. I went through the same with my Mother, whom sadly died in hospital from COPD in February. I just wanted to say THANK YOU for contributing. Will be back with a more coherent reply when my anger subsides.

Just know I am thinking of you and your beloved Mother....x

[Phil40 in reply to cosykitty]

Thank you for your reply, so many people have been very kind and supportive today I am blown away x

[Time_2_drink]

Afternoon Phil hope your mum has a enjoyable afternoon with you all thanks for all the information you p m. Me pleased to hear your mum is stable at the momment x

[Hidden]

I am so sorry your poor mother is going through all this. Some of it sounds very familiar to when my sister and I was dealing with old ill parents. We had to learn a lot about the system and their rights like you have and keep fighting and insisting they had the care they were entitled to. It's wicked - that's was it is. As carer don't forget to look after yourself too.

[Phil40 in reply to Hidden]

Thank you. I knew looking after her was going to be a challenge but this is something else! It is so important to self care and I am rubbish at it.

I have an older brother who my Mum believes has sun shining out of a nether region. Him and his nasty wife do absolutely nothing at to help, barely visit her and generally don't care about her at all. I fell out with them over a year ago and will not speak to him because he is very strange and quite toxic. I don't think I will be able to forgive what he doesn't do to make Mum a bit happier. I don't say anything to Mum as it upsets her to face the truth so I don't make her.

There I go again.Not bitter nor angry haha! X

[Phil40]

Thanks, I am beginning to think that she's not that stable but is quite happy in herself so seems better?

Her oxygen saturation levels have been higher the last few days than they have for ages st the low 90's but I have a feeling I have read somewhere this can actually be a bad sign.

Not sure though, but she has said she is really breathless first thing so she must be REALLY breathless to actually say so.

Hopefully she will be ok today though, I think she will . X

[Damon1864 Volunteer]

Pleased your mam is stable at the moment, hope she continues that way. Take care. Love Bernadette 😳 xxx

[dyson]

Very well said and thank you for the links from a not very clever person

[shadow4me]

Spot on we with COPD and I presume other lung disorders are treated or not treated should I say with disregard ,I feel like I have been sent home to die apart from a once yearly review by a nurse and visits to nurse or paramedic at the surgery (Wont say doctor can never get in )when ill treatment is next to nothing GO HOME AND SUFFER is the attitude well around here anyway xx

[Damon1864 Volunteer in reply to shadow4me]

I tend to agree with you on what you are saying. I'm beginning to feel as though we no longer matterxx

[Phil40]

Thankyou so much to all who have read my accidental venting this morning and the support and comments.

I am really touched by everything you have said and I had tears starting but I am not crying yet, I don't think I will stop when I do and I am not ready for that.

I am very fortunate to be in the position I am and be able to care for Mum at the moment and be able to fight her corner for her because she cannot because like so many others she is too ill and too vulnerable.

I worked in the health service and what I learnt was the squeaky hinge gets the oil. Try to keep asking questions and bothering the GPs, nurses whoever you need to to get the best care you can. Just be that squeaking they have to address so you go away. And if you're like my Mum I hope you can find some support from someone who can Squeak and ask questions and point out very assertively that you do matter; you deserve the best treatment you can receive because we are all unique and wonderful individuals that make up us as a whole and no one is more or less important or worthy than the next.

We had lunch at a pub and Mum is ok but not great but she saw her granddaughter and great grandsons and smiled.

Today has been a good day and part of the reason for me is the amazing things you amazing people have said to me here and made me feel so very less alone than this morning when I wrote that post.

I feel very supported and I haven't for a very long time thank you all so much and I hope I can do the same in return.

Best wishes and regards

Phil and Phil's Mum x

[Johnem in reply to Phil40]

Hi Phil, I would just like to say that you are a great son and I'm sure that your mother must realise it by now.

As mentioned just once before, I have severe COPD, mostly emphysema and have also been down the road described by you. I am am 79 and have four kids, two of each, all know my condition, but only one daughter bothers with me and she lives over 150 miles away, I haven't seen the others since leaving the Lake district over 15 years ago, used to see them often then as the holiday was free for them. I imagine that they will get quite a shock when they turn up for my will reading, lol.

Your mum is very lucky and I am happy that your help seems to be good for her.

Take care and all the best.

John.

[Phil40 in reply to Johnem]

Hi John, thank you for your reply, the one relative caring seems to be a very common occurrence for some reason. I am glad you have a daughter who steps up to help. People are strange I have concluded. Especially my selfish weird brother. All the best my friend

[Christina1941]

Hello Phil, nice to meet you. I read your novel and enjoyed it very much. I have felt the same about my circumstances, I am 75, widowed and live alone, I am at end stage COPD and I have to rely on my family for almost everything. I get a check up once a year, I had double pneumonia back in January and was hospitalised, I am also on oxygen when needed. It seems to me that once you are supplied with the medications you are forgotten, a sort of 'Well she is sorted'

I don't know if any of this is making sense, but I so sympathise with your mother and you. It's a bit like bathing your head against a brick wall. I have tried, up till now to deal with everything myself, independent Annie my family call me, but I have asked my son, who works for the NHS, he is a psychotherapist, to come with me on Friday for my annual check up and let him see if he can get some sense out of them.

I seem to be writing my own novel now, sorry. Please give my love to your mother and thank you for being a lovely son/daughter (not sure which) Take care and tell Mum to breath easy xx

[Phil40 in reply to Christina1941]

Thank you x

[katieoxo60]

Hi Phil40, sorry your mum does not seem to be getting good care. As you say yourself not unusual. But a lot of this care is based on old attitudes not the new constitution in my opinion. Glad you have made it public as many people still think the drs word is final, and like you I found out personally from experience that the patient as little say in their care unless it is within the financial budget of NHS or what a body of doctors would feel was good care ( which is the criteria for medical negligence cases) not the new approach suggested by the constitution. Many treatments are based on a wait and see, which could result in more health damage. I note your comment about the oxygen your mum receives, this is a case of poor recording which is almost as bad as incorrect diagnosis and treatment. I agree with you the current system seems to be working on the basis of until it is critical carry on as usual,but this contradicts the early intervention idea, of prevention and keeping people out of hospital and as well as possible even if chronically sick. Another area of doubt is social care, it is supposed to keep a patient as independent as possible, but you can't get the things to maintain independence unless you are severely disabled. And most care seems to have to be paid for at a fee way above the allowances the DWP give. I am sure we could go on but it only helps our feelings to be expressed does not solve the problem, of how do we get the care we and our families are entitled to so we are not stressed as well as ill. You and mum enjoy your day x

[Damon1864 Volunteer]

Hi Phil it is disgusting the way your mother and the rest of us get treated. I hope everything is going ok. By the way can you give me the name of your book as I love reading . Thanks love Bernadette 😳 xxx

[Phil40]

Thanks Bernadette; I am sure I won't go long before ranting out another book so don't worry haha. X