February 9, 2017 at 8:48 pm #147433Thinking on moving
I’m planning to transfer to London, althogh i’m affected by muscular dystrophy, and i’ll be looking for a job. It’s crucial to me to gain a better understanding on how the NHS works. For example, I have pulmonary issues, a respirator full-day on, cough machine and an aspirator. Are these services funded by the NHS in England too?
I’ll have more questions but it will be enough for now, i think
Many ThanksFebruary 11, 2017 at 5:37 pm #147473Reply To: Thinking on moving
Where is your moving from? Its it from another UK area?
I gather each health board in England is slightly different but wouldn’t imagine them altering your health plan. the differences I see across the UK is that some patients pay for head gear supply. The best place to ask would be your current Respiratory provider. Ie I dont own my vent the hospital does. Would a transfer of ownership be required from one Health Board to another for maintenance purposes and repair.
"""""""What doesn't kill you makes you stronger""""""February 12, 2017 at 12:48 pm #147479Reply To: Thinking on moving
I think Catatude has hit the nail on the ehad about the equipment. you will need to contact your supplier for all your equipement to find out not only who owns it but also if there is a maintenance agreement that goes with it too. In my part of the world we are told that we do not own some equipment and it has to be returned, a special cushion for example, but the likes of walking aids do not as they are disposable! You will need to contact the authorities where you are moving to as well, as far ina dvance as possible, not only to discover if they can take over a contract/give you new equipment but also to see if you need to be assessed for it all over again.
As far as the NHS works it is in mysterious ways. No two Trusts work exactly the same as largely service provision is dictated by local needs and demands as well as the clinical leads own wishes. You will experience different waiting times too for the specialties you will need to consult, as they will certainly be different to where you are now. they may be shorter they may be longer. Not forgetting GP services which are undergoing substantial change at the moment. you will need to reguster with one firt of course and that will involve finding one that will take you on, and of course one that suits you as a patient. If you have contacts down there then they can do a lot of this donkey work for you, but if not you will have to do it on your own. Perhaps once you find a suitable area you might try and find a local MD group who could give you more specific answers to your questions.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015February 12, 2017 at 10:11 pm #147484Reply To: Thinking on moving
These are useful informations indeed, thank you.
I forgot to say i come from Italy, the healthcare system here is excellent but i don’t think it’ll be able to grant me an indipendent life as my parents get older. (Will you permit me to be sincere? My greatest concern is about being ‘parked’ in a clinic or hospital with no more chances to keep on with my life. Do you know what i mean?)
My goal is to live at my home, once all is settled, with the help of a carer, of course. I hope this will be possible or easier in England.February 12, 2017 at 11:41 pm #147485Reply To: Thinking on moving
unfortunately being “parked” in institution or old people’s home is a issue many disabled people in the uk face.
I really don’t know what special help is available for persons coming from EU.
But I would caution. Contact the Italian embassy to see if they can advise.
I myself have been in a battle with the authority’s to get personal care help which as I work, I require to pay towards also. People are trapped in hospitals across country waiting on authorities agreeing to fund care at home. I’m not trying to put you off. But the Uk and NHS may be good but it’s not without issues or increasing pressure to cut budgets.
The allocation of carer hours is often poor and many are facing further cuts to the support hours they have risking safety and independence at home.
Another factor is housing. Unless you can buy or privately rent a house that’s suitable. The availability of wheelchair suitable housing is difficult to secure from the local council authorities. Some towns and cities harder than others or very expensive to rent in.
There might be assistance if you where coming to UK for education but with UK leaving the EU/brexit. No one really knows what’s happening
Sorry can’t be more help.
"""""""What doesn't kill you makes you stronger""""""February 17, 2017 at 8:22 pm #147687Reply To: Thinking on moving
I supposed brexit could have caused some major problems..
I will be renting/buying privately and this may be of help. Your suggestions are very good.
Unluckily, it sounds like we are all on the same boat about indipendent living..
It would be wise for me to visit the city personally and have a look at things and talk to physicians or burocrats, i guess. Who’d you suggest me to talk to?February 18, 2017 at 2:05 pm #147688Reply To: Thinking on moving
Im really not sure what your best option is. it may be a case of contacting the Hospital Respiratory Department for the City you want to settle in.
https://www.citizensadvice.org.uk an information service
Above is the Muscular Dystrophy Face book group. It might be worth posting there to see if any other members have relocated from Europe or even another region within the UK.
Independent living remains a struggle in the UK. where working or not disabled people stand to part fund care packages to live in own home.
"""""""What doesn't kill you makes you stronger""""""August 5, 2017 at 8:48 pm #150916Reply To: Thinking on moving
In my area the Respiratory is 100% but that may be down to the staff and the type of budget my unit has. Friends in other areas across the country struggle with getting the right respiratory care. not all respiratory dr are knowledgeable about MD and Ventilators some tend to treat as sleep apnea. and supplies are harder to get in some areas
My original Neuro was very good.
Health services care in the community and access to physio is generally problematic across the country unless paying privately for physio.
Personal care budgets from local council for personal care etc is very difficult to get.. get enough hours and to keep. everyone also pays towards this depending on income and savings.
"""""""What doesn't kill you makes you stronger""""""
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