My First Ceiling Hoist

As some of you may know, my very first ceiling track hoist was *finally* fitted on Monday 11th December.

I now have a straight track in my bedroom and a separate H-frame in my ensuite bathroom.

Why I need a ceiling hoist

I am 29 and completely non-ambulant due to Ullrich congenital muscular dystrophy. Being rather petite, I have always been manually transferred (yes, lifted by family and carers) rather than hoisted. This method has always been preferable since it’s much quicker and frankly less faff. But, we’re all getting older and more frail.

I live with my parents who are both in their 60s. They are my primary source of support, though I do employ a carer part-time. My mother underwent a full knee replacement in August 2017, and is therefore limited in how much she is able to help me. Consequently, we have reached a stage where a ceiling hoist is a necessity.

A long and frustrating process!

Back in October 2016, Mom was told she needed a full knee replacement. The following Spring, my only carer announced she would be leaving within the next few months to pursue a career as a paramedic. With this in mind, I contacted my local community occupatinal therapy team to request an assessment. I was told they’re vastly understaffed and, with an extensive waiting list, I would need to be in a terminal condition in order to be seen. I appreciate their predicament, I really do, but I was unwilling to be fobbed off so easily.

I was instructed, over the phone by an OT I had never met, to “camp out”, meaning I should wash, dress and be toileted on my bed. Yes, for a prolonged and indefinite period of time, I should go without a shower and simply not wash my hair. (Due to my physical limitations and my wheelchair, there’s no way I could wash my hair over the sink).

Disgusted at her casual disregard, I asked my neuromuscular consultant to issue a letter of support. On receipt of this, an OT suddenly found time to visit me in my home for an assessment. Following this, representatives from Prism Medical and TPG DisableAids attended separately to advise, measure up and draw plans. Both rep’s then submitted quotes to the purse holder at County Council who, of course, approved the cheapest option.

NB: A portable hoist was trialled but proved unusable with the layout of my room and the type of bath in situ.

Prism Medical

We were expecting Prism to arrive at 9am on 24th October 2017, as arranged. Having waited over an over with no sign of anyone, I called only to be told they weren’t coming because of a “technical issue”.

To cut a long story short, Prism claimed they couldn’t connect the track from my bedroom to that in my ensuite bathroom. This is despite consulting with occupational therapists and agreeing to do the job. Prism also claim they left telephone messages for both myself and the OT’s, on the previous Friday, to inform us that they wouldn’t be attending. Neither I, nor the community OT’s received any messages. I call bullshit!

Dad even removed the partition above the bathroom door in preparation.

Later, I learnt that Prism have similarly disappointed several others, resulting in formal complaints being issued against them. So when the purse holder at County Council told me she would renegotiate with Prism rather than approve funding for TPG to carry out the work, I insisted otherwise.

Having to fight for your rights and basic needs is, unfortunately, very much part and parcel of having a disability. ‘Tell, don’t ask!’ This is my motto. In my experience, if you are not clued-up and assertive, those in authority simply fob you off.

TPG DisableAids

Thankfully, Funding was approved after a different OT, accompanied by the rep from TPG, visited to discuss and re-evaluate the situation.

Rather than trying to connect the single rail in the bedroom to the H-frame in the ensuite bathroom, it was decided that two separate hoists would be best.

My carer had by then handed in her notice and would be leaving at the end of the month. I was seriously starting to worry the hoist would not be in place before Christmas.

But much to my relief, TPG (who, compared to Prism, were infinitely more professional and efficient throughout) booked in for the 4th December.

Then, just my luck, we were hit by the worst snow in 7 years! It was like flipping Narnia.

I tried to remain optimistic though in reality I knew there was no way TPG would be able to make the journey from Hereford. And they didn’t.

So, it was third time lucky, on the following Monday that the long-awaited ceiling hoist was installed. I no longer need to worry about hiring new carers as lifting is not an issue. Furthermore, the pressure is off Mom – literally! And, the thing I am perhaps the most happy about – my dealings with community OTs and the County Council are over.

For now at least…


(Apologies for the poor quality of the images. All were taken by myself on a Samsung S5!)

Hoists in Hotels | MDUK Trailblazers

Last month Muscular Dystrophy Trailblazers launched their report following an investigation into the need for hoists in UK hotels.

Over 100 Trailblazers responded to the survey, sharing both positive and negative experiences.

This is an important issue that affects the lives of so many disabled people, myself included. Without the essential facility of a ceiling hoist, we are denied the opportunity to travel, whether for work or leisure purposes.

With only 18 UK hotels having installed ceiling hoists for disabled guests, this is clearly an overlooked and ill-considered feature. Who is designing these ‘accessible’ hotel rooms, anyway?!


I was one of the respondents to the Trailblazers survey. Here is my view:

“I am an infrequent traveller, not because I lack the desire but because it is so difficult to find appropriately adapted and affordable hotels. Even getting away for a single night is an almost impossible challenge, since hotel rooms are, disappointingly, not equipped with ceiling track hoists as standard.

Although some people get around this problem by hiring (at an extra cost) or taking with them a portable hoist, this is not practical for all. Portable hoists are cumbersome, difficult to store, transport and manoeuvre. Furthermore, many people simply don’t have access to a vehicle large enough to carry such large-scale equipment.   

I have Ullrich congenital muscular dystrophy and am completely non-ambulant. I can’t safely transfer and so I either have to be hoisted or manually lifted. Understandably most people, excluding family, are reluctant to do the latter. So, if I want or need to get away from home, my only current option is to ask family members if they are willing to lend their time and support (far from ideal).

With less than 20 hotels in the UK equipped with ceiling track hoists, our options are severely limited. For those of us who need this facility, a premium cost is incurred, and then we are restricted to specific locations. Sadly we are not free as others are, to occupy any hotel room in a hotel of our choice, anywhere in the country.”


Click here to find out more information and from other contributors.

Changing Places Awareness

Imagine being denied the basic human need to go to the loo; being unable to access a toilet whenever you need to. Imagine having to hold it in all day, every day. Having no choice but to strictly limit your fluid intake to the point where you cannot risk drinking from morning until evening.  

My experience

This was my life until 2011, when I underwent medically unnecessary surgery to insert a suprapubic catheter. Of course I didn’t want an operation or an indwelling catheter. By no means was this an easy fix, believe me! But I just couldn’t do it anymore; I was making myself ill and relied on assistance from others in order to carry out the seemingly simple task of toileting. No longer could I inflict undue stress on my body and mind.

So, I resigned myself to the only option available to me, that being the suprapubic catheter. I no longer depend on other people, nor do I have to struggle and suffer the indignity of using small and frankly ill-adapted disabled loos. But, 250,000 disabled people in the UK still do.

The truth about disabled toilets

Often there is not enough room to fit a wheelchair in disabled toilets, let alone space to transfer, adjust clothing and accommodate a carer too. Baby changing facilities get in the way, grab rails are too few and carelessly installed, the toilets themselves are too low, and hoists… what hoists?!

Changing Places

The 19th July 2017 marked the second Changing Places Awareness Day and eleven years since the campaign began. I’ll admit it’s only relatively recently, through social media groups, that I first heard of Changing Places toilets. Though there are now 1000 registered Changing Places toilets across the UK, I have yet to see one.

What is a Changing Places toilet?

Each registered Changes Places toilet includes:

  • a height adjustable adult-sized changing bench
  • a tracking hoist system, or mobile hoist where not possible
  • adequate space for the disabled person and up to two carers
  • a centrally placed toilet with room either side
  • a screen or curtain for privacy
  • wide tear off paper roll to cover the bench
  • a large waste bin for disposable pads
  • a non-slip floor

To support and raise awareness of the need for Changing Places toilets, Muscular Dystrophy UK established the #FitToBurst campaign (Keep up to date on Twitter!)

As a Trailblazer myself, I offered my thoughts in response to the question (posed on Facebook): What does it mean to you to have more Changing Places toilets?

 

Here is my full response:

To be honest I’ve never seen or used one. I don’t know if it’s because I live semi-rurally (are they located predominantly in cities/larger towns?)

If so, I think it’s important that there are Changing Places loos in smaller towns, villages and more rurally as there are people in need in these locations too.

The lack of such a facility locally makes me feel restricted, excluded from society and considered less important. I don’t know if I’m correct in assuming that Changing Places toilets are mostly in cities, but if so, it makes me wonder why. Is it a funding issue? Is it ignorance, i.e. the belief that disabled people don’t live rurally?

The majority of disabled toilets I have used throughout the years have been vastly inadequate, filthy, often neglected or used for storage!

As I say I’ve never seen or used a Changing Places loo – unfortunately. But I can think of so many people locally, young and old, who would greatly benefit from having access to one.


To read what other Trailblazers have to say click here.

Find out much more about Changing Places by visiting their website.

What I took on holiday to Whitby | Wheelchair Life

I recently spent a week in historic Whitby, staying in an impressively accessible cottage (read all about it here!)

But before setting off, I had to prepare and plan, even more so than the usual holiday-maker, as I have Ullrich congenital muscular dystrophy and am wheelchair-bound.

There are many things us wheelie folk need to take with us when travelling, besides clothes and a bucket and spade!

Here is my definitive guide…

1. Both my manual and powered wheelchairs: This year we ventured up north to Whitby where the terrain is rugged. I therefore thought it wise to take my manual wheelchair as a backup, should my power chair struggle. The luxury of travelling within the UK is that there is no luggage limit. I have a Citroen Berlingo wheelchair accessible vehicle (WAV) in which there’s plenty of room for all the added extras I need to take with me. I personally would never take my powered chair on an airplane, having heard so many horror stories of loss and irreparable damage. But travelling by car means that I can easily take both my wheelchairs.

2. Wheelchair charger: No brainer! I wouldn’t get far without it.

3. Bipap machine and a spare mask: It’s always best to take at least one spare of everything you NEED when travelling.

4. Extension lead: you can’t be certain of where plug sockets will be located in your holiday accommodation. I need at least one situated next to my bed to power my NIV (Bipap) machine throughout the night. This isn’t always the case and so an extension lead can be extremely useful if you have a lot of equipment to charge.

5. Lightweight thermal blanket: I struggle to adjust my position in bed and I often find the duvets in holiday accommodation too heavy for me to turn. So, I prefer to take my own blanket, which can be rolled up and compacted. This means that I don’t have to worry about those heavy, immovable duvets when travelling.

6. Medication:

  • Antibiotics, should I become ill whilst on holiday (best to cover yourself!)
  • Antihistamines (Boots Hayfever Relief Instant-melts are pricey but good if you can’t swallow pills)
  • Spare inhalers (I use Salbutamol – marketed as Ventolin)
  • Painkillers (Nurofen Meltlets Lemon are good for those who can’t swallow pills)

7. Lists: As someone with a disability, it’s good practice to do a little research before travelling, even if only for a day trip. I like to make a list of accessible places to dine, attractions, transport and even the places to avoid.

Time spent pre-planning will allow you more time to enjoy your holiday.


If you have a disability, what extra items and equipment do you take with you when travelling?

Let me know in the comments, I’d love to hear from you!

My wheelchair accessible holiday to Whitby

Once again the lovely SimplyEmma invited me to guest-post on her blog (go check it out!) and so I chose to write about my recent holiday to Whitby, North Yorkshire.

To read my second blog post for Emma, click here.


I recently returned from my annual, week-long family holiday. This year, my parents and I chose to stay in the UK after all the hassle we had last year with flying (find my review of our trip to Salou, Spain here).

So, back in February we booked a self-catering accessible cottage through Disabled Holidays.

We’ve always loved Yorkshire; the history, countryside, charm and culture. But we also wanted to be near the coast and so we opted for the seaside town of Whitby, situated in the Borough of Scarborough.

Accommodation

A wheelchair accessible holiday cottage in Sneaton Thorpe:

  • A large ground-floor property, all rooms are generously sized. More than enough room to manoeuvre with hoists, wheelchairs and any other equipment required.
  • 2 bedrooms, sleeps 4. Large living/dining area and sizeable separate kitchen.
  • Huge wet room with both bath and shower! There is a wall-mounted shower seat, though these are rarely any use to me as my balance is poor. I therefore pre-requested a static shower chair with armrests (as you can see from the photo, there are no armrests on the chair!) However, there are sturdy, wall-mounted grab rails either side and so this suited fine.
  • The door ridges could be problematic for some wheelchair users. I use a Quantum 600 powered chair which managed the front door but struggled with the patio door. Alternatively, I went around the side of the property and through the gate in order to access the garden.
  • Stunning views of Whitby coastline, the surrounding countryside and the Abbey in the distance.
  • Ideal location: quiet and peaceful yet only a 10 minute drive to Whitby town centre.
  • Overall very impressive and well thought-out accommodation. My only complaint is the beds, which were VERY firm and uncomfortable. I use an electric adjustable bed at home with a regular mattress but I’ve always slept on normal beds when away, without issue. There was however, plenty of room underneath to use a manual hoist should you need to.
  • I would thoroughly recommend this property to anyone with a disability, particularly wheelchair users. My only suggestion would be to take some form of mattress topper and maybe a blanket as only heavy, winter duvets were provided.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Places I visited

Robin hoods bay

  • Historic fishing village, scenic views. 10-15 minute drive, south of Whitby.
  • Pavements are fairly wide and smooth. A reasonable amount of dropped kerbs.
  • Sufficient disabled parking (not exempt from payment).
  • Most pubs and restaurants are wheelchair accessible.
  • Very steep towards the bay itself. I chose not to venture down as the gradient was too steep for my wheelchair.

Whitby town

  • Could do with more dropped kerbs although generally flat in the west side of the town. Pier is mostly accessible (steps to reach the very end but you’re not missing out).
  • The beach is accessible via slope and the sands are firm (powered wheelchairs and scooters may struggle!)
  • You can hire mobility equipment including scooters, manual and powered wheelchairs, beach wheelchairs and even an all-terrain wheelchair from Whitby Tourist Information. I would advise you do this in advance! Call: 01947 821001 or click here for more information.
  • West side of town is much more commercialised than the east side.
  • Plenty of disabled parking (not exempt from payment) and accessible toilets (take your Radar key). I recommend the new Marina car park toilets, located near the Tourist Information Centre, as they’re the best equipped and the most pleasant.
  • East side far less accessible depending on your tolerance for cobbled streets. Manual wheelchairs would struggle unless pulled backwards which is obviously not ideal or particularly appealing. I ventured through the cobbled streets and Whitby Market Place in my Quantum 600 and didn’t get stuck – so it is doable.
  • There are some interesting shops showcasing local arts, crafts and Whitby jet jewellery.

Scarborough North Bay

  • Flat, wide, smooth, even pavements.
  • Dropped kerbs, free disabled parking, ramp access to beach which is accessible depending on the wheelchair or scooter you use.
  • My heavy Quantum 600 power chair got stuck in the sand, and I had to call on the assistance of some friendly locals to haul me back onto the pavement. However, manual wheelchairs shouldn’t encounter any problems as the sands are flat and firm.

East pier and Scarborough town centre

  • Impressively accessible: flat, even, wide pavements and plenty of dropped kerbs.
  • Free disabled parking.
  • Much more commercialised and populated than the North Bay, so if you prefer the peace and quiet, stick to the north.
  • Lots of amusement arcades, fast food and tourist/gift shops.
  • Beach again is very flat and accessible although powered chairs may struggle.
  • Accessible buses and sight-seeing tour buses.
  • The main disabled toilet in town (Radar key required) is small and unpleasant! I would use one of the accessible toilets within the pubs or restaurants.

Whitby Abbey

  • The Abbey is surprisingly accessible for all. I really enjoyed my visit as it was so easy to get around and there was nothing I missed out on.
  • Smooth, even paths and slopes where necessary. Even the grass isn’t bumpy.
  • 4 disabled parking bays, 2 large lifts and disabled toilets at the main entrance and in the tea rooms.
  • All staff were extremely helpful and advised us of the most accessible routes. Even the gift shop was a decent size, allowing wheelchair users to browse without bumping into other visitors.
  • I highly recommend visiting the Abbey!
  • Obviously, the famous 199 steps are in no way disabled-friendly. But you can park at the top and take in the view.

Final Thoughts

While North Yorkshire is admittedly very hilly, rugged and rural, it is for the most part accessible to those with disabilities, as I discovered. It’s not always easy or comfortable to get around in a wheelchair, but it’s worth a bloody good try as the North Yorkshire Moors has so much to offer.

There are many narrow, winding, steep roads and country lanes to navigate. For this reason I think it’s important for anyone with a disability to have access to a car in order to explore Whitby and the surrounding area.

* All photos taken by me


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