Help please. What support would you like ?

[PaulineHM]

Hi everyone,

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

[Bingo88]

Good morning Pauline. Well the 1st is for the doctor to listen to the patient and communicate with them and explain things because I have had situations where I have said what's going on and I have been given a blow test to check my lung function. Given no indication of the result and just told a prescription is being sent to my chemist. Unless you ask questions you don't always get answers. Brian

[katieoxo60]

Hello Pauline HM nice to meet a patients representative. When I was first made aware of my lung problem I would have just been quite happy to have a definate diagnosis to work with. Its some 15 years ago now and my case was assessed by a multi disciplinery lung team. To date they still behave at the local hospital as if I have no lung problem. I have a life limiting disease , live alone and manage a three bedroom home with no help only the ones I pay , when there is a crisis there is no one to turn to. I would love to see changes in how chronic sick are viewed and DRs who can talk to those who would like more info from a specislist and explain whats available on the NHS . Its quite frightening when you live alone and your lung condition flares, plus I am sure its the same for heart patients etc. There are no drop in clinics for long term illness advice , like there is for maternity care etc This is just the changing times , my GP says I am ill and gives me a prescription but there is no time to get the details down of how my illness symptoms make me feel or restrict my normal life. Thank you for caring . One last point if the DRs can't say whats wrong how are we expected to convince others we are ill or disabled.

[lovejoyliz]

Hello Pauline, good to see you here.

I would like to see more information given to a patient about the availability of any New Trials for COPD patients, at present the Doctors, and even the Snr Respiratory Nurses, and the Respiratory Consultants fail to source these types of Trials are available.

I have only noticed in here where someone has made a post about trials that have been posted, only to find when you contact the hospital doing these trials have no spaces left.

When l saw my Respiratory Nurse 2 weeks ago if was a different person and she at the end of 10 mins her last words were shall we refer you back to your GP !! good grief, after l had explained to her that l was having problems with my breathing due to a large swelling lump above the navel which l have to hold in order to walk anywhere, she said l needed to get that seen to, l told her that this had been going on for the past 5 years and l am still waiting as l was told there was a long list. To my mind this could have been dealt with right from the start as after the tests at the time they said it was a Limpoma.

The Doctors need to listen more to the patient and they also need to keep up to what becomes available for COPD patients, there is much more going on with "Cancer Treatments" than there is for COPD which is a death sentence as we are told it is an incurable disease, did they not say the same thing years ago about some cancers? but look what happens today for cancer suffers, they have a better chance of living than a patient with COPD, so why are we placed as a possible minority.

Let's see more help for the COPD patient.

Many thanks for reading.

[PaulineHM in reply to lovejoyliz]

Hi lovejoyliz,

Thank you so much for your comments. I do agree with you, although the staff are definitely overwhelmed.

I know the Asthma + Lung UK has done a great job in highlighting the unmet needs of patients with COPD and other respiratory conditions. the ex CEO of the charity has moved to the Kings Fund and I heard her say that she is till recognising the respiratory conditions still don't receive the level of care they need. So she still has her caring eye on us.

There are new treatments being looked at and trialled. the big Pharma companies appreciate that it is worth developing new treatments to help the growing need in the patient population.

I don't know too much about getting on a trial. They are sometimes advertised on Facebook though. Perhaps worth a look ?

Go well.