As a patient representative I have a meeting planned next week with local respiratory health services who have asked me, what type of support do I think that patients who have been diagnosed with a lung condition, would like after diagnosis.
They are also asking how best can they engage with us too.
I could have a BIG guess at this but it would great to hear from all of you what type of support you would have found helpful.
Your responses will be very welcome and I look forward to reading them.
Go well,
Pauline
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PaulineHM
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Hi, I was born in 1935 with PCD, but don’t look at that your forum as not much contact. I was diagnosed when 32, but got no specific interest or help, 10 years ago was sent by Gp to respiratory consultant who wasn’t much help. My daughter paid to look on line at interests etc of all respiratory in area, and she found my good special consultant Dr Sullivan who is knowledgeable about my condition and very helpful. At moment have pseudomonas and awaiting blood tests etc for IV treatment at home. I read your posts in lung conditions find them interesting and helpful. My mother lived to 111, so have her strong genes.
Yes, just adding me to list of people with PCD so would be included in tests etc. Had visit from WHO who had found 50 with Pcd about 1990. Wanted to know how I coped etc. She wouldn’t say where she got my name. X
Yes, preferably f2f with a living breathing person. I can see how being housebound peeps might welcome online consultation however I need a bit of human interaction. I feel totally left out & isolated from local medics. My practice has excelled at flu & covid vaccinations but that's all.
I have a diagnosis of asthma/COPD. I had the good fortune to have had an excellent GP Practice Respiratory Nurse who held regular appointments to review and assess how things were going, push for Consultant’s appointments, schedule Pulmonary Rehab, and was easily contactable by phone to leave a message with a query.
Of course Covid came along, and reviews became online, but I could still contact her by phone. Then she left, and the Practice has no plan to reinstate the position.
I did speak to the Respiratory team at our local hospital, but they only see people who have home visits, or have gone to the hospital. I am now back to the potluck of a GP appointment, and a variety of interest and knowledge of respiratory problem management. Such a shame, and a backward step as far as I’m concerned. 🤷♀️
So for me, it’s dedicated Respiratory Nurses or Medical professionals are vital for ongoing Post-diagnosis support.
Thank you Beech for your detailed response. Ongoing support...what does that contain please ? I do agree with you. What does the content of this type look like for you ? Can you just write a few points please ?
1. Following on from Beech - every gp practise should have a specialist respiratory nurse
2. Staff training - gp practise invite patients in to tell staff how it is living with lung diseases
3. As part of staff training, invite trained respiratory drs,nurses, lung physiotherapist in to talk
4. Maybe gp practise could have a say 2mthly open session for patients with lung disease,in a group.available staff attend,for chats about various diseases and how we manage & what more we think the practise could do.give staff better understanding & empathy
Totally agree with you Patk1, and that is how the 38 Respiratory Champions do work in some degree here. They do support other practices nurses too with their respiratory work load.
I have wondered if the social prescribing service could help with local support groups ?
They already offer that here to people with Diabetes, which meet with a specialist nurse supporting. What do you think of that idea ? Would it help ?
my practice has a “respiratory specialist nurse”, who is also the specialist nurse for diabetes, Thyroid problems, obesity, hypertension, cardiac care.
I have all of these conditions and more.
After 3 years in this practice, I have had one appointment for everything.
She added a Beconase inhaler to my asthma medication because of persistent dry cough post hospitalisation for pneumonia . The hospital consultant had asked about my respiratory support so I was truthful in saying it was non existent.
That was September 2023 and my follow up appointment with the hospital consultant is 28 Feb 2024.
I really feel that this is not enough support particularly as I was also in acute renal failure which thankfully was reversed.
This is a very frightening experience which plays longer on the mind. However, specialist review was promised to be no longer than 6 weeks but it’s not.
The people making the appointments have no idea what I have been through. They just keep shifting the goal posts to meet the needs of the department.
In my opinion, post hospitalisation should be 6-8 weeks unless needed sooner. Once stable, an annual consultation with a respiratory specialist doctor should ensue. The same review should be offered to all patients with chronic respiratory disease.
In the intermediate, a real respiratory nurse should review patient’s with chronic disease to keep an eye on them.
I’ll probably be repeating other ideas, but please glean what might be helpful to you, PaulineHM.
Following on from the loss of my GP-based Respiratory Nurse, I’m thinking local to myself for continuity of personnel, or a location with easy physical access:
A central hub of Respiratory Specialist Nurses to provide a telephone or face-to-face support service or signposting to outlying ambulatory patients to:
General Information; Guidance on Medication; carrying out Annual Assessments; Exacerbation advice and management, access to Rescue Packs; Medication and escalation interface between Patient, GP and Consultant; enrolment on courses.
I could of course continue - it’s really about not feeling so alone in trying to manage a chronic condition, which is where many like me are now.
I often wonder if some of these needs you have identified could be met by social prescribers who already offer a similar service ie hub/support group to people with diabetes locally. Similar I think to the former pre pandemic Breathe Easy groups where a health care professionals would attend as well.
So grateful to all those who have responded and supported in this quest to work towards some better service provision.
People matter, patients and staff… and it all looks to be moving to less contact between people! The human connection is important for everyone - staff included isn’t it.
You are probably right. As I was writing it did occur to me that a point you made about other nurses providing some of the care, or the ALUK nurses those information pointers is already there, it’s just a matter of thinking a bit more clearly! I was spoilt with an excellent Resp. Nurse, and have felt her loss keenly. As you say, the human interaction has been so very important, and losing that is probably a greater loss than we realise initially. Technological progress isn’t everything!
In my opinion beech has provided a good informed idea.
No I don’t think social prescribers fit the bill. It really needs to be a nurse or doctor with specialty qualifications in respiratory medicine and nursing.
I don’t want a diabetic nurse when I can’t breathe neither do I want a respiratory specialist when I have hyperglycaemia.
Yes, they all have basic training and will help you out of a hole but unless you have ever been in the position where your breathing was failing, you felt helpless, you could hear but couldn’t speak and you thought death was imminent, then you might not understand the need for specialist respiratory care.
Am so sorry to read that you have had such tough times. Yes have knocked on heaven's door twice over the years. They won't let me in yet though!
I am thinking of social prescribing facilitating a respiratory patient's support group ( rather like the former Breath Easy groups, where specialist respiratory staff could support those attending.
Hope you keep well.
GPs, general respiratory doctors and resp nurses to have more training in bronchiectasis. I have been lucky in my knowlegable consultants. I have had the same one as Morrison for 20 years and before that the man who trained her. But when I have been unfortunate enough to come up against respiratory consultants at other hospitals or on wards my life has been a constant battle against their ignorance. Only last week I had an interchange with a 32 yr old registrar at my surgery who started talking to me as though I was a two year old whilst spouting rubbish based on copd training not bronchiectasis. Luckily my GP takes the advice of my consultant and most of my treatment is direct contact with her at the hospital. have had bronch since I was 3 - now 73. I have never had anything which can be called support. No respiratory nurse - although the resp nurse at our surgery cannot even say bronchiectasis. I have had to fight for my covid boosters because even though I have seriously damaged lungs and heart failure, which means that those 2 consultants wrote letters stating that I must have them, I do not have a compromised immune system. So actually, as I have always had to fend for myself including having to.get to my surgery to collect my drugs although still recovering from 12 wks in hospital last year, a broken hip and extreme breathlessness. I would not know what support I need. The last time I had respiratory rehab was when I was taught to do it myself in 1956. Requests for RR are met with blank looks. It is more a case of better access to the ward I need at the hospital where my consultant is when I get poorly without having to go through the horrors of A&E and similarly, the provision of home IV which is supposed to be an arrangement between my consultant and my local hospital but in actuality is very complicated and difficult to achieve.
Yes it is very different for children now. I have seen every variation as I have had this for seventy years. Also some hospitals do have access to adult resp wards but not many.
The consultant who initiated the children’s open access scheme retired …later the ward was closed for overnight admissions ….travel miles to the next hospital .
My daughter long grown up , but a worry for parents when the ward closed overnight.
My nephew had access to for asthma. It was a great source of comfort to his parents knowing that he was being treated by specialist doctors and nurses and physiotherapists.
This was real support because he also had a nut allergy which was very frightening.
Thankfully, he grew out of his respiratory problems and allergies although at 39 years, he remains very sensitive.
The team at the hospital were a marvellous support.
Goodness me, life sounds very tough for you there.
Here locally they set up last year ARI’s. Two clinics, Acute Respiratory Hubs, running at the weekends. So if you feel you have an exacerbation brewing then the emergency doctor ,could refer you there to be seen by a small respiratory team for assessment and treatment. So no need for A and E. People have found it very helpful.
If you had that locally would that be a useful service for you to access ?
Would a virtual ward be helpful for treatment and monitoring at home ?
Ha, it all sounds very good but does not exist where I live and if it was local to me I would end up being seen by doctors who know nothing about me. This happened when I had a haemorrhage brought on by a new cardiac drug and was taken to Warwick where I live. I had to insist that they speak to my Birmingham consultant.. Last year I had four pneumothoraxes and ended up spending 12 weeks in the QE. Whilst they put in many drains and did two pleurodesis, supervised by my consultant. I refused to let the ambulance take me to Warwick because I don’t trust them.Even though I had contacted my consultant I still had to go through an eight hour A&E process at the QE to get on to a ward twice. The second time was because ward doctors had discharged me too early thinking that the lung had gone back up. If I think that I have an exacerbation I take a week of cipro. If it starts to work I continue to 14 days. If it doesn’t I am supposed to contact my con in Bham and there is supposed to be an arrangement whereby Warwick then put in the line for home IV. This sounds good What sounds simple becomes very complicated because the department can be too busy to see me or put the line in and if I was to get someone to take me to the QE it would be the A&E process all over again. In 2015 I was on the local news because the QE had refused to admit me on the grounds that I did not live in their area. Even though that is illegal and my consultant was waiting for me. The managers tried very hard to intimidate my consultant and to force me to back down and belittle me in the eyes of the reporter to stop it going out. It did go out, they backed down, I was admitted and they apologised. Nothing has changed. In the 1980s and 1990s those of us with consultants at Bham had access to our own respiratory ward. This was stopped and for years it has been a free for all. The consultants have no power to get their patients on to the ward. I have given you enough of my years of anger to digest. All I can say that is that every day I pray that my lung stays up because I know that I won’t make it again through the process if it doesn’t.
I lied in Birmingham until 2018 I was in the care of University Hospitals trust. From 2014 I was also in the care of the respiratory nurses a team based away from the hospital. A phone call to them was all that was needed for a home visit when unwell if they thought i needed to be admitted they would phone hospital and i would bypass E&E and go to either reparatory ward or to holding ward until decision was made as to admit me or not. Living now under Worcestershire trust I am able to contact respiratory nurses direct or ambulance Serices will do and again be admitted. Last time I bypassed A&E and went straight into Resus until admitted onto ward. Community nurses gave me IV antibiotics at home for three weeks. During Covid I was unwell ambulance was called they decided I needed to be taken into hospital the only bed that was available on respiratory was offered but there were a lot of Covid patients on the ward I refused I was then offered at home care overseen by my GP. I know that all hospital trusts are not the same, but I have to say, my own treatment over the years has been good. I have Asthma, Bronc, Emphysema, and Epilepsy. I am now at stage 4 but have been offered a drug that may improve my breathing a lot of side effects but at the minute it seems to be working.
Yes, it is Roflumilast I have been on 250 for three months monitored by Hospital now graduated to the big girl's class at 500. My GP can now prescribe for me. My breathing has improved a little, today I was able to do a short walk holding hands with my grandson instead of being pushed in a wheelchair. Side effects not as bad as I was led to believe so I shall carry on with them. Are you on them as well.
I should add My Consultant did tell me it was a newish drug that was a lot more expensive than a lot of others. In order for him to prescribe a patient had to have had at least three or more acerbations recorded by either GP or Hospital and you had to be at stage 4 of respiratory problems. the first three months would be on a starter rate after that if it was tolerated by the patient the GP could then prescribe.
Last comment I promise. I only weigh 6st 2lb which was one of the concerns of me taking this drug I was told to monitor weight each week and any drop to notify consultant so far, I have held the same weight by trying to up calories as much as I can. I also am on Theophylline but was told I could stay on it.
Hello, no worries, comment as much as you are happy to do so. It’s great to hear from you.
Yes, am on Roflumilast and have been for 23 months now. Up until I started taking it I hadn’t seen a consultant for 5/6 years but definitely felt I was deteriorating. Saw the Cons in outpatients but he had never met me before. Said casually to me well you can start this medication if you like. Getting the prescription was a hassle between the GP and the Cons. I had to stop taking the Theophylline.
As you say, it has to be started by the Consultant and then if all is well the GP can can take over the care. I haven’t seen anyone in outpatients since.
Long story short Roflumilast has very definitely helped me. In summer my regular chronic cough disappears, I have a huge sense of well-being compared to before taking it. Although I have been taking Azithromycin for years alternate days, and am still taking it and I have not needed any additional antibiotics for exacerbations. Still get exacerbations, one last February and one last week but they are more related to my asthma rather than the COPD. Short course steroids usually do the trick. Definitely not getting bacterial infections is a big bonus.
Over the last year, I have lost weight, quite a lot in fact, which I can’t really afford to do. Part of that may be due to me trying to keep my blood sugar levels under control or may be due to Roflumilast? The surgery pharmacist is on my case and she has been in touch with the consultant I saw about it, who really isn’t interested, said he will review me if I have an appointment, which I don’t ! Sigh! Imagine how long it would take to get one.
The up side of taking it has been so good, it has given me back a good few years for which I am grateful. Over the last year I have not had to increase my oxygen prescription.
So pleased for you that your consultant is helpful and I hope you find that you benefit from the medication as the months pass by. So wonderful that you are able to walk a little now. Can your GP help with supplements to help with your weight I wonder ?
Do keep in touch if you would like to and let me know how you get on with it .
Yes wouldn't it be wonderful ! The local ARI hubs are currently in a pilot scheme so not in my part of the county. I would be prepared to travel the 10 miles at the weekend though to reach one if I needed to.
These are only in the county in England where I live, that I know of. There are 2 pilots clinics originally set up to help manage the strep outbreak in children last winter . They extended them to adults and are currently being evaluated. Of course we hope that they will be extended and become permanent. Depends what the stats come out like I guess and budget constraints ?
Information ….I got most of my knowledge from BLF poster and leaflets in respiratory ward , then from Breathe Easy group ….speakers , advice on benefits , pensions , allowances , home adaptations etc. Visits from BLF workers to the group .
Information on medications , how they work . Demonstrate correct use, spacers .
What do do in an emergency ….how many puffs of reliever , when to ring for help .
Peak flow meter …how to use .
Oxymeter ….how to check O2 level and pulse ….when to get help.
A plan of action ….antibiotics and steroids rescue pack , when to use , when to contact health professional .
A printed card that can be shown to others in an emergency .
Bracelet with COPD , asthma etc .
How to help relieve breathlessness .
Information on safe exercise ….BLF had a DVD and book.
A person in health centre who can be contacted ….who will read and understand O2 , peak flow ….can advise on next step .
Thanks knitter for much for your very positive response. Excellent ideas here and yes I wish more folk would make use of the services offered by the Asthma + Lung UK. their support groups online are very good. Not many people in each session though!
I volunteer with adults who have learning difficulties and Mental Health issues.
When I am in the library assisting them with computer skills, it is amazing the amount of people of all ages who approach me to ask if I can help them to fill out forms…
In many towns and villages across Scotland, the internet signal is weak. The Scott government promised to provide internet access for all but I think we will have quite a wait.
I would say a review of what at stage patients with lung problems get referred for pulmonary rehab. I was in hospital for a week after having multiple clots on the lungs, already long standing asthmatic. delighted to go home but with no idea what i was meant to be doing, then you realise you are on your own. At follow up 4 months later, i asked to be referred for rehab and consultant said it was only for chronic people. She must have been thinking about the clots and not my asthma. Finally have done a Pulmonary rehab course by pestering GP and do think it prepares you to more confidently managing your condition and keeping as fit as possible. I have no idea who at our practice has an interest in pulmonary conditions or whether there are resp nurses. Practice info on website would help. I totally disconnected from our practice which has become part of a big group over a huge rural area, like most it is very hard to get to see anyone who is adequately trained and then your time is very limited. Knitters list is great. Its clear that Pulmonary services are hugely variable across the country, Pauline it looks like yours is very good.
Such a positive response thank you. I hope by now you are feeling better ?
Totally agree with about PR being more easily available even when you ask the consultant and they don't help. Pester power is sometimes the only way. Agree with you that Knitters list is the way forward.
Interesting point you make about specialist information being uploaded to website. Have you thought of joining the PPG at the surgery ? Not only to influence the surgery for respiratory services but for all patients.
Our local respiratory services are good, people working very very hard and always seeking to improve things hence this post to gain people's experiences of what can be improved.
Better info. Only ever had a phone conversation with the consultant. I think my bronchiectasis has been caught early, but would like to know if there’s anything I can do to help myself for the future. I thought it was a minor thing to have wrong with me but after being told I couldn’t give blood anymore and it’s on the list for travel insurance I guess it’s not. Obviously there is info on the internet but it seems everyone varies a lot and you can scare yourself with reading that.
Just how to help myself as much as possible alongside taking Fostair spray and Carbocisteine tablets. Also is this a condition that can stabilise if caught early enough or is it something that deteriorates? Other than the diagnosis I wasn’t told much at the time so feel a bit in the dark. I had to Google to find out what it was.
I agree with that - it seems to me that there is a wide variation in the degree of Bronchiectasis. I was told mine was ‘mild’ and shown the x rays - it certainly was a small area. I would suggest more personalised treatment depending on lifestyle and degree of damage.
It would appear that we have a contract with the NHS for person centred care! This is not happening and won’t be happening for the foreseeable future because there are not enough resources.
I know you thrive on positivity Pauline and that’s great but in reality our healthcare Systems in the U.K. are doomed.
I would love for GPs and practice nurses to have an understanding of what pulmonary fibrosis is and not just think it is the same as COPD. Also the same goes for pulmonary hypertension not being the same as hypertension.
From my experience there seems to be a big gap in their knowledge. I know they can’t be experts in all conditions but when I tell them more about my conditions than they know it is a bit ridiculous.
I would have thought that Covid and long Covid would have made dealing with lung scarring more often and so they need to know more.
Thanks Angie, yes agree with you. Many of us are in the same boat being that we know more than the health care staff, which when we need the support isn't helpful is it ?
When first diagnosed you are left to process what is wrong and educate yourself, luckily I found this site. When I first had exacerbations getting the gp to respond quickly with the right meds and for long enough was a problem. The respiratory nurse knows next to nothing about bronchiectasis and just treated me for asthma. Perhaps a local lung clinic with professionals that know enough would help x
Thanks lzb1. Great suggestions there and yes education of some health care staff is looking more essential. Local lung clinics do happen in some areas. We need more of them.
I think you are correct mauschen , I dont think we have a specialist respiratory nurse in the practice, in fact only one of the nurses can take blood and she has a 3 week waiting list x
easier communication between GP and specialist. Better training in Bronchiectasis for GPs. Stopping the assumption amongst the medics that because my Peak Flow readings look normal that I am OK!! They rely too much on my peak flow diary and don't listen to me talking about my symptoms. Making sure that all medics are regularly updated on latest treatments. I know this is a bugbear for a lot of folk - Cutting ththe Waiting time to be seen!!!! Waiting lists in North Wales are a complete disgrace. We also need more Respiratory Physiotherapists here. Huge demand for services and chronic shortage of trained staff = chaos and patients deteriorating as they can't manage their condition without more help/ intervention.
Thanks Tiggertheterrier. Message received! Education for GP's and surgery nurses for people with Bronchiectasis seems to be coming through as a big issues. I will be sure to put this forward.
Staffing levels are hard to fill everywhere. Sadly there won't be a speedy resolution it seems.
I was diagnosed with bronchiecstasis and sent home with the comment ‘don’t worry, it’s no worse than having a cough’, from the (children’s respiratory) consultant. I wasn’t told an action plan, didn’t know what exacerbation meant or how to tell I was having one. It was my GP surgery that set me up with a rescue pack (after I’d already had an infection that had me shaking in bed).
This forum has been the best source of info for me. I have no regular check up, though I always have a yearly one for asthma.
Thanks Beshmeta. Sorry to read of your experience. It seems from what folk are saying is that Bronchiectasis is in the same situation as COPD used to be ( Services for those with COPD can improve further ) I will be sure to make the point about education and preparation about managing exacerbation is put forward.
Yes to a regular check up with someone who knows what they are talking about !
Information on who is available to talk to/help with medication/
Better awareness of all lung diseases . We really need media support but having lung disease featured on the surgery tv screen or posters or info table would be a start.
So with a cancer diagnosis there is usually a treatment path & should be given nurse contacts etc. Thus doesn’t seem to happen with lung disease… maybe because it progresses but I feel I don’t know who to contact for what….
Yes I have appointment with pharmacist next week 🤞🏼
We really need all clinicians to be able to access our records… eg in my case my meds are from gp, hospital & specialist so I have to tell each what I am on all together …..
Hi Pauline. Don't know how other people feel but my conundrum is I can't claim anything and because I can't claim anything I am not entitled to take a free course to work from home, which I would like to do. PIP claim they think I'm not bad enough which is a joke and I can't claim job seekers allowance as I paid my national insurance shortfall in one go. It's not just health worries people have to deal with but financial worries. I also have savings which go against me but that is for when we move to a bungalow hopefully. It's like catch 22. 😒
I would like occasional support either face to face or over the phone. Someone who I can contact if I have a concern or question.
The reason for this is that I live alone and have no support systems either emotional or otherwise. So having someone I could speak to is really important for me.
I’m struggling with bilateral pleural effusion I’ve had since December, I have community respiratory nurses who contact me every 6months to see how I’m doing with my bronchiastasis but will not come out when needed to prevent hospital admission because I have a history that f brittle asthma, it’s been 30 years since I had a brittle asthma attack yet they still won’t come out and my consultant has requested it.
Information in hospitals, GP surgeries/clinics and pharmacies needs to be more accessible and I don’t just mean braille and different languages. By accessible I mean
That the print on posters is a size that can be read at a distance – not everyone takes reading glasses to a medical appointment.
That posters are placed at a reasonable height. Humans come in various sizes and we are all not 6 feet tall.
That posters are not placed on walls behind seats. Someone’s belly and/or crotch in your face is not pleasant.
That posters are not placed in queueing areas so they are obscured by other people
That small leaflets are available which contain just basic information and contact details. Not everyone has a pad and pen or smart phone with them.
That displayed information is current and up-to-date not years old.
even with a family lay there can be a sense of loneliness. I think with a diagnosis should come say a nurse or physio (if there are any to spare) led conversation with family too. I never ‘play’ ill and live my life as fully as possible still able to cook and bake for much needed and loved family get togethers but the following day I must rest and to me that’s ok. I don’t want wrapping in cotton wool but I need the understanding that that’s ok and I’ll know when it’s too much. Sorry to ramble x
Great points about including carers, will pass that on. and about pacing our way through our daily lives. So pleased to read that you recognise that and meet your own needs between being independent and resting. Go girl. ( assuming you are a female ? )
Hi Pauline, I had the misfortune of being diagnosed during the COVID pandemic, and found out about my bronchiectasis and my immunodeficiency by a letter landing on the doormat. It was quite a shock as you can imagine. As I had never heard of either condition I had to google them. There was no contact numbers in the letters, just the fact that I had these conditions. Even now my GP surgery thinks bronchiectasis is COPD and they have no knowledge of MBL, and no desire to find out more.
What I would like in any letter diagnosing a condition, is a contact number of someone who understands the condition that you can call and talk to. Asthma and Lung were very nice, but didn’t have much of a clue either. There needs to be some empathy in the system, as I don’t believe receiving my diagnosis in this way was a product of COVID, it probably still happens.
I appreciate how busy the NHS is, and how broken it is but there needs to be someone you can talk to.
I have noted your comments.Sorry you had your diagnosis by letter!! Although I do think your idea about contact information in the letter would be helpful wouldn't it!
Many of us feel pretty much unsupported at the moment and have felt like that for years. Empathy all round is in short supply....the staff need it as well, many of them are on their knees.
Hi Pauline, I have bronchiectasis and see a specialist consultant who is very kind and I can always ring his secretary if I need to ask him something. What I feel I would benefit from is a local breathe easy/singing or lung exercise group. I rely on public transport so need a class in my local village hall ideally. Feel lucky compared to some who can't even get a specialist but know this would help me so much. Thank you for reading this 😊xxx
Thanks Nula2 for your positive response. Pleased you have a good service from consultant and secretary.
If you are looking for a local exercise class-it doesn't need to be a lung exercise class then your local health and wellbeing team might be able to help ? I go to an Active Balance class every week locally. I have to pace myself, but it is worth it.
You can contact them via your local authority for via your GP.
Hi Nula, a friend was always talking about her Balance Class but was forgetful about passing on the contact details so finally I put Balance Class plus my town's name & uk into google. Up came the exact class & tutor (who's absolutely brilliant & knowledgeable). Some of the warm up exercises are very like those on the PR course too. Hope you find a class to suit you ××
As an aside PaulineHM I once took a pile of BLF leaflets & a small poster to GP here, they never appeared in the waiting room. I also gave GP the details of the post PR course we used to attend (Alex's? ) that never appeared either. The respiratory nurse new nothing of BLF nor about steroid inhalers affecting skin & in fact told me it was impossible 🙄
Hi Peege 🙋♀️, thank you will do that 👍. Was wanting a class near me for people with lung problems (would be great to meet with people who have similar health issues), but that's me being needy (& greedy) 😅. My balance is rubbish anyway so will look it up and as the warm up is similar to rehabs then I have no reason to be picky! Thank you Peege and pleased you are enjoying and benefitting from your class ❤️xxx
Hi! My surgery is very helpful in most aspects, however, and I think this is widespread, the doctors really don't seem to know much about lung diseases. I have learned most from this site (thank you). When I asked to do PR shortly after diagnosis, the answer was "Oh you're not nearly bad enough yet"!!!! It would, I feel be more useful earlier on rather than trying to do it whilst fighting severe breathlessness!
Joined up treatment between my doctor and consultant would also be useful.
A respiratory hub sound like a great idea and would prevent many hospital admissions I am sure. Waiting in A&E with possible Covid carriers for hours is not useful. To avoid this you need to call an ambulance, but you are not always poorly enough to warrant one.
Also, could you please arrange for my local hospital to stop trying to kill me?!! xx
It is something we are looking at locally. Trying to get people moving before PR, because that really helps people stay well. MRC 2 score is being considered as preferential for attending PR. Trouble is that the staffing levels in the NHS are so low ( you can guess why? ) they wouldn't be able to offer that for a good while, if ever. x
What I have shared with my GP Patient Participation Group: information about the condition at the time of diagnosis, preferably with a leaflet or at least an official web page address to find out more; plus the offer of a referral to Pulmonary Rehab and details of local support groups.
Face to face appointments for yearly checks & not telephone, when first diagnosed with COPD I wasn’t given any information on how to help stop progression, took till I had been diagnosed 10 years to be given pulmonary rehab , would definitely be better to get that on first diagnosis to help you keep healthier, since COVID only ever telephone appointments for checks, then told nothing more can be done, not the most helpful advice I’ve had! It’s as if once you’re diagnosed with it you’re forgotten about & written off
Agree, I know that feeling. I agree that a proactive approach to help us manage these conditions ourselves at an early stage would be very helpful. Will add it to the list to take forward.
When I was diagnosed with COPD, there was absolutely no information given. I'd never heard of it and didn't know what they were talking about. I was then given some inhalers, which I didn't know how to use and that was it!
After contracting pneumonia, I was directed to the respiratory consultant and again - tests were done - but no information given. I finally had a locum consultant who sent me for a CT scan and after 3 months was given the diagnoses of emphysema. I had to squeeze this information from a different consultant as he did not even know that I had been waiting for these results.
My feelings are, that in the area I live, there is a great deal of prejudice against smokers/ex-smokers - basically it's your own fault! They do not take into account other factors that have also affected my lungs. There is also an attitude regarding medication - best fit suits all - if I have ever requested a change in medication as I am getting unpleasant side effects, I am treated like a hypochondriac and must be imagining things. I'm very underweight and have been told I must have an eating disorder, which is a rather odd disorder to develop at 61, but when I suggested it was due to the medication they had given me, was ignored. This is incredibly frustrating!
I'm at a point where I avoid all medical people, as much as possible, as they show no empathy towards me, whatsoever and can never answer any questions I put to them.
Oh anng18, so sorry to read of your experiences. It is horrible isn't it to be treated that way. I have a similar back story. Diagnosed 20 years ago and just left to get on with it. Didn't know about exacerbations until 3 years later when I needed a lung irrigation due to a severe pneumonia. A hard way to find out. And even then it is a matter of constantly updating the information for myself.
Bias against smokers ( even if we have stopped ) is reducing. COPD is such a complicated condition. Often caused by smoking but not everyone who has COP has ever smoked.
Losing weight is often a consequence of COPD. About 20% of our energy goes into simply breathing. Yes I know, am trying to gain weight myself here. My wight loss may be due to Roflumilast, we are checking it out.
I hope that you can find some medical support from someone you can trust.
I think information support & quick access when necessary are the most important things. I’ve had Asthma since childhood & have inhalers. I’ve had yearly reviews but one year the nurse diagnosed COPD it was a shock. She changed one of my inhalers. That was it. No other input. A year later at my review the nurse said your notes say you have COPD but I don’t see that & undiagnosed me 🤷🏻♀️. Throughout all that time I had no information whatsoever & was scared to ask tbh.
I then developed lung nodules from my RA & or Pneumonia & was monitored well by a Respiratory team for 3 years but on the last CT it showed Bronchiectasis. I received a letter saying they need to see me but then lockdown happened. My GP hadn’t a clue so prescribed antibiotics which I didn’t take & asked him to contact Respiratory for advice. They told him no antibiotics yet but prescribed Carbocystine. I received a phone call months later from then but that was it. I’ve never been seen by Respiratory team & all my help has come from this amazing knowledgeable group. I have got a rescue pack in place all be it 7 days not 14 & I do breathing exercises from internet sites. Our GP’s rarely see patients these days & Ive had so many courses of antibiotics for possible chest infections without having my chest listened to during lockdown I complained to the practice manager who said well I suppose we could examine you in the car park!! I think people should be seen after diagnosis even if it is mild like mine & have access to help if & when required. Basic really. Sorry it’s turned into a bit of a rant.
Otto, a rant is fine, thank you and goodness me what a trying time you have had. Yes agree, information and follow up support is vital to help us manage our conditions and help to keep us well.
What area do you serve? I am now in Essex and get excellent service from the local COPD team, formerly at Braintree but I believe now moved to Provide offices. What effect privatisation will have is of course unclear.
Hi Pauline. I suffer with Emphysema & Congestive Heart Failure. I have already had lung reduction surgery. Right in 2017 & left in 2022. The original consultant who recommended me for LVRS in 2015 has never seen me since that time because i was under the care of St. James Surgical Team.
I met with the surgeon in December 2023 to review my situation. I still struggle walking any distance, bending, trying to make the bed etc & i mentioned to him i had not seen the original consultant since 2015. My medictions also had never been reviewed (Serevent & Ultibro) since 2014 & with the progress being made in respiratory areas i wanted to check what could be done to help my situation. Naturally the surgical team could not help but they do copy the local consultant with every review & the expresslymentioned this in my letter hoping thy would pick this up.
At end of January i received an appointment for 25 March to meet with another respiratory consultant at my local hospital. Last week i received another letter cancelling the appointment. When i questioned why, they said they didnt know & when another appoitment is due, it will be sent in due course!!!
Can you advise how i can speed up a meeting to see any respiratory consultant to help me. I do have bottled oxygen at home & use 2litres per min when my sats are low. Otherwise i try to keep as healthy as possible.
A more timely follow up after testing is absolutely necessary. I knew I had COPD but I needed spirometry tests to access full respiratory services. I had spirometry tests on 26 October and had not received any results by January (the consultant cancelled my appointmentfor 26 January and it still has not been rescheduled). I therefore had to make a GP appointment which I coincidentally attended this morning and discovered that I fall into cat 3 Severe. This past nearly 5 months of waiting has been severely detrimental to my mental health. I have been worried sick and terrified. My diagnosis is really, really difficult in any case but has been exacerbated by months and months of not knowing. Incidentally, the pulmonary rehab course is brilliant and it would be really great to have subsidised access to trainers/physiotherapists once the 6 weeks is over. I hope this helps to inform your research. Thank you.
Hi TDM2023, Thank you for your contribution. I am grateful and any information is useful to create an overall picture of what people would like.
Waiting that long for your results and feeling worried sick and terrified for all that time is unacceptable.
Agree wholeheartedly about PR and there are local exercise classes which you can join to help keep you going. They are provided by the local authority health and well-being teams. Your GP can refer you. I pay £3.50 a time for Active Balance. Some areas provide Respiratory exercise classes.
Our NHS respiratory service provided a post PR Maintenance class on line during the pandemic and they have continued it! it is really great.
It;s frustrating when GP surgery don't see it as their role to provide support with consultant's treatment plan -makes it very problematic for me to get tests etc locally when needed. They've decided some things no longer the responsibility of primary care. My brilliant consultant's team have struggled to speak to anyone at the GP surgery and their written communications take ages to be acted on and get added to patient records. When you're not feeling great it's hard to be patient - patients are encouraged to contact surgery by email to GP admin team who then 'send tasks' to others - nice in theory but not always effective. You're made to feel like a nuisance for chasing stuff up. Some sort of effective liaison between secondary and primary care providers would be good,,,,
Totally agree with you Leafsweeper. Many GP teams don't have email for patients to use, so I guess that is a bit of a bonus for you, even it isn't perfect. I have noted your comment, it is helpful to know the situation.
Maybe some way that all respiratory nurses attached to GP practices are of the same standard of knowledge before being let loose.told by one that taking 8 puffs of Trimbow is ‘absolutely fine’ - was somewhat sceptical,checked with lung uk and others and all said to ignore that and it must never be used in that way. For those whom, for whatever reason cant fact check the advice given, its downright dangerous.
Heavens above soppsokes. Some practices here locally have Respiratory Champions which are practice nurses with additional training. They are real godsend to patients who have access to them.
Hello Pauline, I would have liked somewhere where I could ask all the questions which never occurred to me when I was first diagnosed. In fact this forum supplied most of the information I was looking for. But it would have been nice to have reassurance close at hand. Actually the pulmonary nurse team round here would probably have done so. I think I am luckier than a lot of forum members in that respect. It would have been nice to be offered regular yearly check ups to see how I was doing. My GP practice offers asthma check ups, which consist mainly of asking if I have taken up smoking or boozing, advising me to eat healthily and to exercise. No peak flow readings or spirometry. Not a lot of use to me.
Agree totally Christine. We need a bit more of a patient centred approach at the tick box annual long term reviews I think ? Thanks for contributing to this exercise.
Everyone seems agreed on more post diagnosis support. The last asthma nurse I saw did not know how to pronounce bronchiectasis, and wisely did not want to discuss it. That left me in limbo of course.
Put simply Pauline time. Time to assimilate the diagnosis. Time to ask questions. Time to review what we have been told. Time to be educated about our conditions. Time to learn about various medications available. Time to learn how to manage our conditions. Time to draw up our own personal pathway. What to do when. Who to contact etc. Time to be listened to. Time to feel valued. Time to build a trusting relationship with those in charge of our care.
The next thing on my list (all though of equal importance) is educated and empathetic health professions, consultants and doctors of all descriptions and all nurses, particularly respiratory/asthma/copd nurses. (Asthma/copd nurses should have a recognised qualification which is updated on a yearly or two yearly basis) A respiratory review with a nurse should be more than reading out items on a checklist. ( They may as well ask us to tick the boxes and not bother talking to us at all)
All medical professionals at the end of a consultation should tell us how we are doing. You are doing well/things have gone downhill.
If a medical professional doesn’t know what the problem/ solution is, then say so. If there has been a mistake- even if not by them, but they are aware of it, then say so.
A GP should be able to access hospital records, but more importantly hospitals should be able to access go records even if they are in different hospitals. e.g. At the moment if my consultant says I need a certain medication then he writes to the GP - the GP pharmacist rings me and then it is put on my prescription. This process can take over a month. A consultant can also see if there have been any changes to your medication and if you have had problems since your last review and can be prepared for the appointment. It can also give an up to date overview of the patient and opinions to each party.
doesn’t this depend on where you live? In an ideal world and when diagnosed copd 15 years ago o saw respiratory nurse every 6 months then referred to clinical trial which I have done for over 12 years. I don’t see a consultant except when on a trial, they don’t understand why I don’t see a respiratory dr or consultant and in the last year since Covid I have seen the respiratory nurse twice! ( meaning every 12months.
I’ve made an appointment to discuss but it’s all down to the patient now to manage their own health so perhaps a place where you could be seen to track where you’re at and to see if you need extra intervention because I’ve no idea
Hi peepparuby1. Yes I agree- a lot does depend on where you live but that is not the way it should be, plus at the NHS has been trying to clear the backlog from covid - no pulmonary function test or spirometry were being done + no routine face to face appointments. Add to that delayed appointments because of industrial action adding to pressure to get through the backlog quickly.
I actually have a face to face on 20/2 with the nurse. I have a spirometer which I bought but they’d asked me previously to do this at home and download onto their client website - no idea how to do it so I’ll ask
Spirometry is now considered unnecessary except for diagnosis. This is because someone can have a low spirometry score and be functioning well and vice versa.
Consultant time is at such premium these days isn't it ? I di agree to a large extent about self management. I enjoy my own self management, however I would really appreciate the support from the health care professionals to do that. The isolation is often so real isn't it?
Thankyou for you're post I do think more nurses should be trained for peaple in asthma copd and other lung issues at the docters surgery for peaple I have to ask when she at docters cause she does her rounds at other surgery s and when I've seen a nurse she said sorry but it's not realy my field not her fault but there is a lot and I mean alot off peaple from young adults to golden oldies like me with lung issues with right nurse younger peaple stand a better chance off enjoying life lung issues no fun so I'd like to see more training and more nurses for lung issues thankyou
I agree with you Germantara. Can you ask your surgery if they have a nurse there who is respiratory champion. They are being trained around the country to improve the quality of respiratory care. Thank you for your comments.
I have had good and bad support after diagnosis. I have been diagnosed with asthma five times in three years.
One bad is determining who is responsible for my care post diagnosis.
My hospital on my third diagnosis initially had little interest in my ongoing care and then accidentally deleted me from their systems so no more appointments were offered to me, while my GP practice said I was under hospital care so withdrew support. The hospital would only take queries via the GP. I eventually ended up in a and e, and then I was looked after again.
So after diagnosis can they clearly say in writing who is responsible for your care.
A second bad, is that after I am diagnosed within a few months, I am normally transferred, the new place then does another load of tests. So I am being tested all the time but not being treated effectively. My fifth diagnosis took a year, due to lots of pred, but was only required as my new hospital would not accept the tests done by the tertiary asthma centre, who did my fourth diagnosis. They said they had to do their own.
So firstly after diagnosis if they refer you, can the new hospital accept the tests done by the old hospital.
Secondly, they should only transfer you for good reason.
With me, Hospital 1 cardiac dept with lung dept advice diagnoses asthma, transfers me to GP which tests, diagnoses asthma, as will not accept hospital diagnosis, refers back to hospital 1, which tests again, keeps me under hospital care, but does nothing, so I collapse again, ambulance take me to tertiary centre, hospital 2, which tests for asthma, diagnoses. Hospital 1 tell hospital 2 that they are not allowed to nick their patient, so transferred back to hospital 1, which then tests again and diagnoses. Then hospital 1 suggests transfer to hospital 3, another tertiary centre, who will then test again before treatment. Patient refuses as fed up with being tested. Hospital 1 then comes up with good treatment plan.
The best I have had after diagnosis is access to an asthma nurse.
After second diagnosis at GP practice before hospital referral I had unlimited access to a GP asthma nurse.
After fourth diagnosis by a tertiary hospital I was given, a once a month appointment with a hospital asthma nurse and a helpline. They sorted out my treatment.
With fifth diagnosis I now have unlimited access to hospital asthma nurse.
I would like to have been told by my GP that I could refer myself to a consultant I didn’t know for 10 years when I went to my 2nd pulmonary rehab then I was finally diagnosed with Emphysema rather then just being told you have COPD
Hello Pauline, I’m now 73 with lifelong bronchiectasis and also pseudomonas about 10 years ago. I’m managing fairly well, but when I feel a flare-up coming, I was told to submit a sputum sample before starting my emergency antibiotics. Recently I needed to start my antibiotics but the receptionist wouldn’t accept the sample until I’d seen the doctor. It is extremely difficult to get a n appointment these days and the earliest was 6 weeks time. I couldn’t even have a telephone conversation with my GP for 6 weeks.
It would be helpful if they could provide sample pots with the GP’s details, and let us fill in the date/time ourselves, with instructions for the receptionist to accept them.
I have COPD Emphysema, RLD and IPAH which I get treated by a Hospital in Sheffield (98 miles away) My first lot of GPs treated my heart and lung conditions as 2 separate entities and I had a rescue pack on hand for when needed!
However, this changed when I moved house and had to change GP's . Most if not all of my issues were blamed on my Heart Conditions. They seemed to agree on Asthma but that was about it I think that was a lot to do with the Heart attack I had in 2003? Even after a 32 day stay in ICU with Empyema and 5 and a half months off work in 2008, they did little about my lungs! In 2012 I found I had worked with Brown Asbestos for over 10 years That I demanded they look into it! Once I had seen a specialist my lung conditions were confirmed. However, it took an A&E Admission with suspected Sepsis. The consultant was amazed and annoyed over my GP practice not taking my poor lungs into account. It all came to head because he wrote a very scolding letter to my practice. My preferred doctor even said "You were right your lungs are crap!"
I had felt for many years that even my consultants relied on the rested stats as their base for my treatment and did not listen to me continually telling them when I have sat down for a bit, I will recover, but once I do anything mildly strenuous I struggled! My IPAH is not fully understood by many Doctors or nurses except Sheffield who have treated me very well as they are one of 7 specialist centres in the UK who treat 7000 PH sufferers!
Well goodness me Offcut, what a tricky time you have had over the years! so pleased that you get good and helpful support from your specialist centre now. Thank you for your response to my question.
I have had very little help and support from my G.P practice since being diagnosed with bronchiectasis. Some sort of support group would be useful, or access to a respiratory nurse. I was referred to a general consultant at a local hospital but since being signed off and passed back to the care of my G.P nothing is forthcoming. My G.P has informed me they will doing nothing unless they receive instructions from the hospital. I feel as though I am in a catch 22 situation. My G.P. practice has no experience of dealing with bronchiectasis patients. I even had to have a meeting with the practice manager to explain why I needed to be supplied with emergency antibiotics to keep at home if I experienced an exacerbation.
Thank you for your response. I can only suggest that you speak to the helpline at Asthma + Lung UK. about your options for improving the service you get.
There are so many people who are in a similar situation.
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