Forum Replies Created
did you see this post on SIA facebook?
contact [email protected] to find out more
Personally I wish airport access support teams would have a sit sling of some sort to enable safer lifting for transfers to/from an aisle chair. Being hauled up by a trouser belt or by arms under the armpits cannot be good for the passenger or the lifter.
Are you becoming an employer yourself or will you use an agency to manage personnel and payroll tasks?
There are template documents such as a contract of employment on the website employingpersonalassistants.co.uk which is part of the skills for care website. This is a great resource if you are employing your PAs, with lots of useful information in the section Employing your own care and support (via the Recruitment and retention tab) and on their Information Hub.
I hope this is helpful to you.
Hi there, just wanted to suggest contacting your Spinal Cord Injury Centre. The Outpatient / Community nursing team may have some guidance or recommendations. It is definitely worth doing some research to ensure you get the right level of pressure relief. NHS Community Equipment should provide a pressure-relieving mattress free of charge, though the range of sizes may be small. You can also ask the SIA Advice Line. Good luck, Graham
I hope university life is going well for you in Plymouth. I know the city well as I lived there for 13 years before moving to Exeter. My role with SIA is to meet and help people affected by SCI in Cornwall, Devon and Somerset. If you have time to drop me a line on [email protected] we can arrange to meet or discuss how best to reach people in the southwest with a similar type of injury. I see from your other message board posts that you found a Syringomyelia Support group on facebook – has that helped you to link up with people in Devon? I think a similar social media group could be useful for people with spinal cord injury in the southwest, as a way of sharing information and supporting each other. Hope to hear from you. Graham
Have you considered the adapted villa L’Origine in Collioure, southern France?
I think some adapted accommodation in Brittany is advertised in the FORWARD magazine classified ads.
Hi Katie, by joining the SIA you have gained access to lots of free information, advice and support – much of it on this website.
Your father is likely to be entitled to funding that will pay for carers and assistants who can provide appropriate health care and social care and ensure his needs are met.
If you need to make home adaptations then help with costs is usually available. Ask your father’s Occupational Therapist to help you apply for a Disabled Facilities Grant.
This is an interesting issue – I too would like to know what standby care arrangements people have in case their PA/carer is unavailable.
I had this situation last month, when my employee PA was ill and told me the day before she was due to come. I contacted several well known spinal care agencies without success. “Summer is a particularly bad time to need an emergency carer”, I was told by one agency, because it is holiday season and there are only enough PAs to cover the regular clients. Another agency that has helped me out before (admittedly with more notice) keeps a PA on standby, but they had already been assigned to another client in a pickle. A few agencies said that before they could help me they would need to visit to check my needs and complete the paper work and put me on their books in exchange for a fee. And they then would recruit a PA. This seems to be a common stance on emergency care, which I suppose is understandable as the priority for an agency is to look after regular clients.
On PA-pool (a PA recruiting website) I contacted ten PAs who were looking for work, but none were available to help. Many were at home (not in the UK) and some were currently working and looking for the next job to start the next month. That was disappointing! Former PAs, while very willing and concerned, were also unavailable at short notice.
So how about domiciliary care agencies? In my experience they are often understaffed and over-committed and likely to offer at best a half an hour here and a half an hour there. And most likely the carers are not trained in spinal cord injury care. But at least it would be something.
So there is a very real possibility of suddenly being left with no carer. Which is a huge worry.
Does anyone have a suggestion or an example of a workable emergency care arrangement?
How is the fracture healing? I had a spiral fracture about 3 years after my SCI when I caught my foot on a sofa and turned my power chair. Advice from my spinal centre was to go for a butterfly cast that could be sealed using velcro and undone to check for pressure issues. At first I was taped up in a bright blue cast from below the knee to half way down the foot, but soon developed a pressure sore on the side of the foot where it pressed on the edge of the cast. And there was no way to check what was happening to the skin under the cast, except at Fracture Clinic. I hope things go well – for me it was about 15 weeks with a cast, but looks as good as new now.
Hi, this message board may be a good place to for people to give you ideas that could help with your search for a PA, but I don’t think there will be many PAs reading these posts or visiting spinal.co.uk.
A really good place for help is Skills for care where you will find a step by step guide to recruiting a personal assistant that you can download, and all sorts of other information.
Gumtree may be good for advertising locally and there is a website called PA Pool which I have used to find live-in PAs, although not all have experience with spinal cord injury care and many are looking for long term, 24/7 live-in jobs.
I have been recruiting live-in PAs for quite a few years now, so if you have questions you are welcome to contact me [email protected]
Hi Steve, It is the responsibility of the airport assistance team to help you on to or off the plane. When you book your flight online you specify what kind of help you need. The airline pass that information on to the airports. Airlines typically allow you to take two items of mobility equipment and a bag containing medical supplies separate from any hold luggage you take. Once you have a booking reference you must call the airline special assistance helpline and they will explain what you are allowed to take in addition to your regular luggage. For example Easyjet may ask you to obtain a letter from your GP detailing the supplies you use, to show when checking in your medical bag. They will certainly ask for the make and model of your wheelchair (if it is a powered chair) to check size and weight and make sure it is not too big to be loaded into the hold and also to check the battery type.
Transferring between chair and aisle trolley and airplane seat is usually done by two assistants lifting you in a way that is often undignified or at best un-stylish. I take my wheelchair cushion onto the plane and sit on that to reduce the risk of skin damage.
There is helpful travel info on this website under the LIVING WITH SCI section, but I would second Anjela’s good advice – check everything with the airline and research the airports too.
Hi Jason, You can reach me on [email protected] if you want. I’m C6 and employ my own PAs. Cheers, Graham
Hi Gerry, Is the jeans shop in Germany you mention Rolli-Moden? I have bought trousers from this company through their website and found them well-made, long-lasting and well designed for a wheelchair user. They normally cost 90-110 Euros / pair, but I see they currently have a clearance sale on with lots of styles selling for 19.90 Euros. Cheers, Graham
I traveled to America a couple of years ago with my family and PA and took out pre-existing medical condition travel insurance through Fish as they provide cover for replacing a PA due to illness. It makes the policy quite expensive, but I suppose that is because of the extra cover included in a specialised policy. Here is their website blurb.
As one of the UK’s leading and longest established disability insurance specialist we understand how many people depend upon the services of a personal assistant or carer. For this reason our policy will cover you for the emergency replacement of a carer should they be unable to support you through illness, accident or injury.
No doubt you will find other insurance companies that provide this extra cover if you search the internet.
Your PA will also need an ESTA. This website explains the visa waiver program, eligibility and application process.
Have a great trip.
you may qualify for a Medical Exemption Certificate, that allows you to obtain prescription supplies without charge. Here’s a website explaining who qualifies for Help with health costs
For example, you can get all your NHS prescriptions free if you have a continuing physical disability which means you cannot go out without the help of another person.
Your GP must apply on your behalf.
Sorry, I don’t know of any charities that would help specifically with travel insurance, but there may be Charitable Funds willing to support your holiday costs. It may be worth trying a website called turn2us to help with your search.
Have you used a comparison website like medicaltravelcompared.co.uk? It may find lower cost insurers for pre-existing medical conditions.
Good luck, Graham