Hi, this is the first Emma back again! Bit confusing as there are obviously two Emma's from the UK posting, but hopefully we can both be of help. I will try not to duplicate other Emma's post too much!
I am 30 years old and I have a brother with CF who is 32 years old. I'll call myself Emmie from now on as that is my username on the UK site I told you about, so if we speak there you'll know who I am hopefully.
CF care in the UK is very good and probably a similar standard to that in the USA. Average life expectancy here is currently approx 30/31 yrs, which I believe is much the same as in America?
In the UK all patients with CF are advised to attend specialist CF Centres, i.e a hospitals which specialise in the specific care of those with CF. These are spread over the whole country and consist of teams who work solely with those who have CF. Obviously there are centres for children with CF and centres for adults with CF. I believe you can choose which particular centre you attend, although obviously there is the issue of the distance you would want to travel.
Clinic appointments vary according to how well the person with CF is. For example, they might be every 6 months, 3 months or every fortnight if you are not so well. If you have any problems you can also contact the staff at the Centre directly at any time.
When you go to the Clinic you are seen by a team of staff comprising a Consultant (doctor specialising in CF), Registrar, Cystic Fibrosis Nurse, Physiotherapists and often a Psychologist or Social Worker. Each centre has at least one CF Nurse who is usually able to visit you at home in between clinic appointments if there are particular problems, providing that you don't live too far from the hospital.
Standards of inpatient care are usually very good, although facilities may not always be as smart as you would be used to if you have only ever used very modern private hospitals. There is some variation in the quality of the surroundings that adults with CF get as inpatients. The larger CF centres tend to have specialist inpatient adult CF wards which are generally nice and modern with pleasant surroundings. However other smaller adult CF centres do not have these specialist CF wards for adults, so we have to be admitted to general chest wards where most people are very elderly/sick and these are often not very enjoyable places to have to stay! The standard of care is still very good however.
Many children and adults with CF have their courses of intravenous antibiotics at home, after being trained in the hospital how to do this safely. This means that they do not have to be in hospital every time they need IV treatment. I believe that chidren are sometimes able to have their IV's administered at home by a community nurse too, although I'm not sure how widely available that method is.
As regards the financial issues...As citizens of the UK we do not have to pay for any of the care we receive, as the Government funds the Health System through taxation (The NHS-National Health Service). This means that all GP care and hospital care (both inpatient and outpatient) is free at the point of delivery. There are private hospitals that can be attended if you choose to additionally pay into a Private Health Insurance Scheme, but in general only a minority of people choose this option. In the case of CF care, the best treatments would be through the regular health system anyway as the private health sector does not cater for patients with CF.
There are prescription charges for those who are not exempt from paying them. These would roughly translate as about $12 per item. However those receiving certain state benefits and those on low incomes do not have to pay these charges (neither do people under 18 yrs, those in full-time education,etc.) However these charges only apply to drugs dispensed in the Community, those from hospitals (or received whilst in hospital) are free. If you are not exempt from paying for community prescriptions, you can buy an Annual Pre-payment certificate for roughly $180 (?) which covers you for any amount of drugs for a year.
I am afraid I do not know what the entitlements are to the NHS for persons such as yourself who move to the Uk from countries outside of the European Union. I would imagine that if you were paying into the tax system (i.e. by working in the UK) then you would be entitled to free treatment, but there may be a certain length of time that you have to be living here in order to qualify. I'm sure this information could be found on the internet.
The other Emma has already mentioned Disability Living Allowance which is a benefit paid by the government to children and adults who have particular health care needs at home. It also provides money for those who have mobility difficulties. As an adult with CF who is unable to work for health reasons, I also receive a benefit from the Government called Incapacity Benefit.
As regards physiotherapy, we use various techniques in the UK, but the physio vest used in the USA is not used here. Young children generally have percussion given by their parents. As they get into their teenage years and as adults there are different techniques and types of equipment that are used independently. For example, Autogenic Drainage involves being trained to move and clear the mucus from the lungs with special breathing techniques. We can also use things like the Flutter, PEP Mask and Cornet which are types of equipment that you blow into which help to move the mucus into the large airways where it can then cleared.
People with CF are able to participate in Research Trials, and I know of some adults who have done this. A great deal of research into CF goes on in the UK, just as in the USA (e.g. currently it is particularly being channelled into Gene Therapy, etc.)
I think the one issue that you may need to consider is weather! I don't know whereabouts in the US you live, but if you live somewhere with a lot of sunshine and good weather throughout the year (e.g. Florida!) you might want to carefully consider the British weather. Spring and Summer are fine, but the winters tend to be quite cold, wet and miserable! This results in a significant increase in colds and other viruses in the Winter months, and as I'm sure you are aware, these tend to end up in chest infections for those of us with CF, which is not great!
I can't think of anything else at the moment that I have not covered, but feel free to ask if there is anything else you are wondering about. Don't forget you can speak to parents of children with CF and also other adults with CF in the UK by using the following website:
http://cftrust.org.uk/ (Click on Meeting Point).
Best Wishes
Emmie (aka Emma), 30 yr old adult from the UK
