We are looking at being referred to a different hospital as we do not feel to be getting anywhere at all with the current arrangements. Hubby is being treated like a Guinea pig. We have booked an apt with the gp for Tuesday morning to see about maybe getting a neb for him along with some oxygen to help him through these next few months. The dla form has arrived, and is being filled in. We have both decided that something needs to change in order to get him better.
Can Anyone suggest anywhere? we live in Worcestershire, but are willing to travel if needed.
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As with a lot of similar questions, some of the best people to ask are in your local Breathe Easy group. They usually know who the good doctor's are, which hospital gives the best service, how to get in touch with people who can sort things out. Check where your nearest group meet at blf.org.uk/BreatheEasy
If you are happy using the computer, why not get the electronic on-screen version of the DLA form - much easier to fill in as you can go back and correct mistakes, add bits in you've forgotten and make sure you tell them everything. Get the form at direct.gov.uk/en/Diol1/DoIt...
GP's are not always the best to ask, you need a specialist or at least a COPD nurse to be able to make the best arrangements.
Gordon-you are the font of all knowledge-this forum would be at a loss without you-your advice is both informative and simpathetic- I really think the BLF should consider giving you a contract-I know that if my condition gets worse or if I need benefits advice -I will be directing my questions to you-Its a pity that you live around the Sheffield area and I live near Edinburgh , because I would like to meet you and buy you a pint !
I just try and give what help I can. I have a peek at profiles to find the locality, which helps a lot. I'm actually in Doncaster, which is on the East Coast rail route to Edinburgh.
We had our honeymoon in Kinloch Rannoch, so lunch in Edinburgh on the way up was the only time I've ever visited the city. I'd love to go back to Pitlochry one day, it was a really nice place
If you are on line you can get details of local breathe easy groups at the BLF site twenty four hours a day and numbers of the district offices, i.e the midlands is Leicester. Also some are listed on local council leisure pages for your area under group classification. Hope that assists, they all meet at different times and days.
It's about 1.5hrs drive from you but the respiratory unit at Glenfield Hospital in Leicester has an excellent reputation. They do a lot of research. I've heard great things of them from patients there, tho personally I go to the Brompton in London cos I live "down south". Here is a link to their resp dept:
Remember you can request a referral to any hospital of your choosing. I think another opinion is always a good idea, especially if you're not happy with your husband's current treatment. It's so important for him and you to have confidence in the people looking after him. Good luck.
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