I have just learned today that the appointments I have been waiting for will not be offered. The Health Board has also refused my request to see a Sjogrens Consultant in regard to its effect on COPD because the Consultant is in a hospital 5 miles across the border in England. I am just staggered. Especially after reading so many positive reports on this BLF site of the benefits of going the rehab pulminary groups. Do I have to sell my house and move to England to get any treatment? Are there any other people living in other areas of Wales that are experiencing the same lack of treatment? HELP!!
No rehab groups offered to COPD patie... - Lung Conditions C...
No rehab groups offered to COPD patients in North East Wales. Nor are we offered an appointment with a COPD Consultant after being diagnosed
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mishawaka
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35 Replies
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Don't want to interfere but how confident is your diagnosis of COPD? I have Sjogren's syndrome and it has caused me to have Pulmonary fibrosis (other auto-immune diseases such as Lupus and rheumatoid arthritis can do the same). Many GPs have little experience of PF (it isrelatively rare) so the diagnosis can take a long time to confirm. Whilst I am sure you would not want to have PF, it clearly is important to have the correct diagnosis as the treatments are very different.
Hope you do not mind me asking this
Maggie
I have absolutely no confidence in my diagnosis maggie, it was delivered in 5 min appointment with the practice nurse, I was given an inhaler, and sent out of the door. I have been trying to see a Consultant with no success and feel so frustrated by my GPs inability to take on board what Sjogrens is. He just thinks its eye drops and throat spray. I am now a bit (alot) worried about what PF is.............will read about it on the internet now. Thank you for responding to my "post" and I hope you are well.
jeannie
hello Maggie, I did read some information about PF and what I read really alarmed me. Crickey. When I looked at the short list of symptoms though, it didnt seem immediately register as relating to me. For a start and despite my attempts to diet, I havent lost an ounch in weight and I dont cough (at all), etc etc but the one symptom that did describe me was a shortness in breath. Could you advise a good web site about Sjogrens and COPD that might help me to see if I do have PF? thank you
Jeannie
yes, I will contact my MP but as it is Cardiff that makes the rules, I dont feel that my MPs comments will have much effect. I really dont want to have to move but I am beginning to believe it may be the only alternative. Houses in North Wales just arent selling right now and especially in my area as there are plans to build a super highway about 50 yards from my frint door. ?!"*+% thanks jeannie
I live in North East Wales and there is a pulmonary rehab programme at Glan Clwyd hospital. I would ask again or get a second opinion about seeing a consultant. I have seen an excellent chest consultant twice and due third visit soon.
Hope you get the supprt you need. xx
I live in North East Wales and there is a pulmonary rehab programme at Glan Clwyd hospital. I would ask again or get a second opinion about seeing a consultant. I have seen an excellent chest consultant twice and due third visit soon.
Hope you get the supprt you need. xx
mishawaka in reply to
hello julie, this is news for me to know and thank you. But last week "NHS Concerns" told me (over the phone) that they do not run the rehab progs but direct COPD patients instead to a charity that runs them???? Also they do not automaticvally give appointments with consultanats for people with COPD because "there are too many of them" (!)>They are phoning me back next week regarding who these charities are???? I am seeing my GP next week and will try to get some clarity because I am like a cat chasing its tail and getting no where. thanks jeannie
in reply to mishawaka
pulmonary rehab number is 01745 445 659 at Glan Clwyd.... they will be able to advise you on the process of being referred by your doc. I think that consultants appointments are not automatic .... I asked my doc for one with the reason that I wanted a medication that the doc could not prescribe. I am very impressed with Pulmonary rehab team and the consultant.
mishawaka in reply to
thank you Julie, have phoned the telephone number you gave and it was an ansa-phone message but it says they will phone me back. Big sigh of relief and I await their call back. Once again thanks for this lead. Fingers crossed. jeannie
in reply to mishawaka
Great 
mishawaka in reply to
they have just phoned me back to tell me that I am outside of their area and so can not treat me. The nurse advised me to see my GP again and literally refuse to leave his office until he does something.........................I might need to take a flask, sandwich and a magazine as there might be quite a stand off. thanks again jeannie
Do you live in the Deeside area? you can get a referal to Wrexham, but no PR in this area as it is too expensive!!!
yes I do.......and yes that is what I was told too. That there were too many people with COPD and the NHS can not afford to treat us with a rehab group. I was told that there is a Breath Easy group I could go to in Mold but when I enquired further, it has apparently closed down now. More over, I was also told though that the referral sent by my GP was returned to him and rejected by the consultant. But there does seem some confussion about this now and the NHS CONCERN staff say they will get back to me next week with more information that might explain why this happened. thank you so much for responding to my "post". Jeannie
I have COPD and Sjogrens and have never been to pr I do exercise at home to a video on you tube. There are quite a selection there to choose from. As for the Sjogrens If you think you have it you can ask your optician and if he confirms this he will prescribe eye drops. I hope this helps
thank you for replying to me question. I do have a diagnosis of Sjogrens and what I am needing now is to find out if this is effecting my lungs. Hope you have a good day today. cheers jeannie
Hi Misha
I reckon it's just the luck of the drawer.
I live in Powys and I get brilliant COPD treatment right up from the Respiratory Nurse who calls in as she " was just passing " to the senior consultant who sent a "or else " type of letter when I had my DLA Tribunal in Cardiff.
I doubt if I would have won otherwise.
I guess I may have been lucky with the throws of the dice.
But you keep throwing the dice until you start getting lots of sixes!
John.
oh John, you are indeed a fortunate person........I keep trying to get a break through but as yet, no luck. Am meeting with "NHS Concerns" ( bit of an understatement) next week to try to get some clarity. Fingers crossed. My major concern is that I have been mis-diagnosed with COPD when I have only one of the five standard symptoms of COPD, which raises ther question, what the heck do I have???
thanks for your response, jeannie
in reply to mishawaka
Oh that's a bit difficult then, if you've not had an accurate diagnosis of COPD or any other lung condition, then you probably won't get referred to PR until you have. You need referral to a respiratory consultant to give you an accurate diagnosis.
As suggested earlier, ring the BLF helpline for further advice.
Good luck with it all.
mishawaka in reply to
I phoned BLF 2 weeks ago and they kindly sent me out a pile of information re COPD and also a seperate NHS leaflet on Sjogrens syndrome. I had to telephone them back to explain that the leaflet did not have within it any indepth information about the relationship between Sjogrens and COPD and referred her to a variety of medical papers about the subject. The BLFnurse listened and assured me that she would pass on this new information to the team. So .............on I go. Also, to repeat, the Respiratory Consultant has returned my GPs referral saying he does not automatically see every one diagnosed with COPD
and more over they do not run a rehab group. I have also just telephoned the number Julie kindly sent me for the service at Glan Clwyd only to be told that I am not in their area and so can not be treated by them. I need a very strong drink just now (green tea)and then will go for a calming walk with my dogs before calling it a day and going to bed. I am tired out . thanks for the thought you put into your replies. Jeannie
in reply to mishawaka
You are in a difficult situation Jeannie, probably best having a rest today and leave it for a day or two then think about things again. I would forget about the connection between copd and sjogrens for now and just think about treating each as separate illnesses, then when you are feeling more up to it you can try again for a more accurate diagnosis if you feel you do not have copd. Meantime just rest up for a few days and focus on keeping yourself calm and relaxed. Give yourself some quiet time.
I was just reading about the sjogren's syndrome symptoms, I don't really see any obvious connection with copd except for the tiredness and fatigue which comes with many other illnesses as well not just copd and sjorgrens.
nhs.uk/Conditions/Sjogrens-...
patient.co.uk/health/chroni...
mishawaka in reply to
thank you for your good advise and wishes BlakeyC. One of our community called Maggie has sent a reply that has been both informative and scarey about the misunderstand between the two conditions, because she has them. She writes that it took a long time to get a correct diagnosis, because Sjogrens is not recognised for the complicated syndrome that it can be and when she finally did find some one who knew about it, her COPD diagnosis was found to be incorrect as a result. She has now been correctly diagnosed as having PF ( as a consequence of Sjogrens) which is quite a different type of beastie and requires very different treatment and has carries with it some pretty diabolical outcomes. Its hard to keep hearing that Sjogrens is a syndrome only needing eye drops and throat sprays when it can be so much more. That is what I needed to phone and tell the BLF when they sent me the standard NHS leaflet that contained such superficial facts. Most of the experts are in Japan, Spain, and Scandanavia (sp?) for reasons I dont understand. The World Health Organ does recognise that there are millions of people who have the syndrome and who go un-diagnosed and therefore treated. Okay...enough. I am going to find the dogs leads now and will absolutely appreciate that I can still do it. thank you jeannie
Hi Mishawaka
I did send quite a long message this morning but it does not seem to have registered. The main gist was that when my eye consultant finally had a definite diagnosis of Sjogren's for me via a lip biopsy - she referred me to a Rheumatology consultant in the same hospital. He looks after people with rheumatoid arthritis, lupus and Sjogren's etc. all autoimmune diseases.
Most people with Sjogren's will probably never suffer anything beyond eye and mouth problems. Unfortunately a few like me go on to have other organs attacked by their white blood cells. For me it is my lungs and more latterly my heart is also involved as I have developed pulmonary hypertension. My rheumatology dept have a joint clinic with the Respiratory consultant to develop a treatment plan to deal with the SS and PF. I have more recently also been referred to the Royal brompton in London who are world leaders in the treatment of PF and Pulmonary Hypertension.
If you do not already have one perhaps you need to ask to see a Rheumatologist - they are the right people to oversee the treament of someone with Sjogrens.
I am afrais I know nothing about Sjogren's and COPD as I do not have this ( nor have I met anyone with this combination although I'm sure it can exist.
The real problem is that PF is pretty rare - my GP said when he first suggested it as a possibility that probably none of the other doctors in the practice had probably ever come across it before. Luckily both he and my rheumatologist had done so.
I do hope this is not what you have but whatever is causing the breathlessness needs to be diagnosed so effective treatment can be started a.s.a.p. to prevent any further damage.
Take care
Maggie
PS If any consolation PF (or NSIP) as often called caused by an autoimmune disease usually has better outcomes than Ideopathic (no known cause) PF.
thank you so much for your reply to me Maggie and then for adding information for BlakeyC in a manner less hysterical than my ramblings. I cant tell every one just how much I appreciate their help. I have seen the local Rhuemtolgist but she looked at me as if I was telling her a fairey tale when I tried to explain about the possible effects on my lungs. I had to asked (insist) that my GP refer me to see her because several months after giving up smoking, I developed a 9 month vicious dry constant cough that kept me awake through the night , constant throat infections, dried out throat, mouth, eyes, sneezes that blew my head off, and dried out sinuses and finally something called burned mouth syndrome that caused my tongue to swell and change colour. So I phoned the Sjogrens Association who gave me the name of a Rhuematolgist who does know about the possible complications of the Sjogrens syndrome but this referral was returned as denied because he does not practice in North East Wales NHS. More over, I can not see him as a private patient because he has not been a consultant for the required amount of time to see patients privately ? (I do not understand this but then there is a great deal that I am finding puzzling).
I wonder where you live to have such a workable set up for the condition? I have just had a reply from some one in my area and she too has some strong feelings about the state of our local NHS. Leaving it to the GP to deal with COPD isnt such a good idea if they have limited knowledge and a patient load that means you can wait 7 weeks for an appointment. With 10,000 patients on the list, the GPs can never quite remember who you are and you then have to go through your own history with them which takes up 5 minutes of the 10 minutes you have with them. I seem full of complaints but
once again thank you for your reply. jeannie
Hi Jeannie
Your NHS situation in Wales sounds horrendous- to think in England we were all feeling jealous of your free prescriptions. For that to be effective you need to have the facilities to get a correct diagnosis first!!!
My first indications that I might have a chest problem was a dry cough (I do not even now when I have an infection cough anything up). I at first assumed that the cough was due to my dry mouth and throat(Sjogen's). The breathlessness I put down to age,weight and lack of fitness at first). It was only as the cough persisted and worsened and I increasingly felt more tired and unwell that I (and then my GP and Rheumatologist) realised that there might be something more wrong- Pulmonary fibrosis was suspected. COPD was never a diagnosis since the crackles in my chest were quite obvious when they listened.
I often feel quite frustrated with the Sjogren's Syndrome Association (to which I have belonged for at least 5 years.) All their literature and quarterly magazine constantly focus on the dry eyes, mouth
and tiredness aspects and only give one line 'some patients experience problems with other internal organs being affected.' They nowhere expand on this. I used to say to others (and myself)- well although Sjogren's is really uncomfortable and limiting to some extent- it will not kill me!! I find it surprising that the SS Association says so little about those situations where the syndrome can start life threatening diseases such as PF, NSIP and PH.
I live in a small town in Northants.
Thinking of you
Maggie
maggie44 in reply to
Hi BlakeyC
Sjogren's Syndrome is an autoimmune disease in which the body's own white blood cells attack the moisture producing glands such as the tear ducts in the eyes and the saliva glands in the mouth. In some people it goes way beyond this and they start to attack the lungs and other internal organs. Inflammation is set up which becomes scar tissue as it heals. In NSIP or pulmonary fibrosis this means that the lungs are scarred and leather like - making the transfer of oxygen very difficult in the alveoli deep in the lung. I assume that they could cause the same havoc in other parts of the lung (further up) which would be identified as COPD.
Maggie
I think I have already posted this link on another post about the same subject.
It might pay you to contact NHS Health in Wales direct about this, also PALS, MP et as mentioned. Here is the link to Health in Wales site:
wales.nhs.uk/healthtopics/c...
You could sell your house to move to England I guess but then you would have to be sure you move to an area where the waiting list isn't too long. I waited 6 months to get on a PR originally. No idea how long the wait is now. I live in England.
Alternative groups for people who can't access PR are :
1. local osteoporosis groups often have exercise groups going and information on diet.
2. A exercise group called Extend may be in your area.
3. Any local exercise group for the over 50s / 60s whatever is suitable for you. Your doctor may well be aware of these and advise what is suitable for you.
4. Age UK may well be aware of local exercise groups in your area.
5. Your local library may have a list of exercise groups available
To learn about managing symptoms, read all you can about PR and living with a lung condition (information provided by BLF) just ring the helpline for an information pack and check out their pages (click red balloon right right).
If all else fails start your own Breathe Easy Group with juliekkay and arrange for a qualified fitness instructor to attend your group. BLF can advise on this also.
blf.org.uk/Search?query=exe...
blf.org.uk/Page/Living-with...
blf.org.uk/Search?query=pul...
One way or another, hope it works out well for you
Best wishes BC
I have COPD I have never seen a consultant or been on any course but I have to say the nurse at my GP's is fantastic but i'm going to talk to her about this course i'm all for self help
good luck with this and hope that there is one in your area , it does seem its all down to your post code though. best wishes jeannie
I think you have a point GP's seem to deal with and manage COPD but having said that our health trust is in a mess and going down hill fast looks like we are going to loose our A&E politicians should never be allowed within a mile of NHS.
leaving anything for the GPs to deal with soley is simply not a workable plan, is it? Unless its a flu shot or a boil on your bum. I didnt know that the A&E might get closed down because that is really worrying. Its the only fall back position for folks who cant get an appointment with the GP and yet who are really ill. Oh dear, oh dear. I heard on the Welsh News that Betsi Cadwali Health Trust (cant spell that name) may be prosecuted for the 37 deaths caused by CD last year and that is bound to effect their already struggling budget if there is compensation to pay out. I REALLY DO NOT WANT TO MOVE, cause I have brilliant neighbors and love my little house and garden, but I am beginning to feel that I might have to do it. thanks again Jeannie
Telford is a big Town and is getting bigger by the day every inch of green land is being built on we need an A&E more than ever.
I joined one of these walk in Doctors they have been fantastic they are open 7 days a week 8am till 8pm Christmas day as well, when I got the flu a few months ago I phoned them within two hours I was picking up a prescription for steroids and antibiotics I would of had to Waite 3 weeks for a appointment at my old doctors
my goodness.............what colour is the sky on the planet you live? Sounds wonderful and perhaps I should think about moving there. thanks jeannie
I think these walk in doctors have been set up all over the country and they do take on people as well as walk in and that is the only good thing about Telford lol
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