The Last 6 Weeks | Disability Battles & Small Wins

May was a funny old month, with slightly schizophrenic weather (is it summer yet?!), and some much needed time to myself.

Since I last blogged in April, I’ve been mostly occupied with life admin and catching up with friends.

The former doesn’t sound very exciting, and it isn’t, but as anyone with a disability or chronic illness knows, there are many ongoing battles to be fought.

I met with various doctors, occupational therapists, and mobility equipment reps. I even managed to recruit a new carer, not easy in the current climate, to drive me from place to place in my Motability WAV (wheelchair accessible vehicle).

My powered wheelchair, partly held together with gaffer tape, continues to fall to pieces, and is now in need of new batteries.

Why do they suddenly decide to fail, without warning??

This is all the more challenging since it isn’t a NHS chair, and so I am responsible for sourcing and funding repairs.

Despite actively bidding online and pursuing a move for over a decade, I still live with my parents in their home – far from ideal for any 33 year-old!

Finally, after a consistent bombardment of calls and emails, community housing managers agreed to meet with me in person.

Though empathetic, they openly admitted it is very much a postcode lottery issue, (I couldn’t tell you how many times I’ve heard that excuse). Consequently, it could take years to rehouse me!

I will persevere and hope for the best, while maintaining realistic expectations.

On a happier note, May provided some space for myself, as my folks took a little staycation.

People often misunderstand my need for solitude. Then again, these people have their own homes and the freedom to do as they please, when they please. It’s about freedom of choice and being able to live life on my terms.

As tiresome and frustrating as it is, this is the reason I battle with medical professionals, OT’s, community housing, social services, and so on – for a better quality of life!

“Though she be but little, she is fierce”

~ William Shakespeare

Wheelchair Review & Complaint

Sunrise You-Q Luca ~ Poor Quality Armrests

In October 2018, I was able to privately purchase a new powered wheelchair, replacing my worn-out 8 year-old Quantum 600 mid-wheel drive.

My old Quantum 600 MWD wheelchair

I opted for a Sunrise You-Q Luca, mainly due to it’s compact and manoeuvrable design.

My Sunrise You-Q Luca RWD wheelchair

I chose a rear-wheel drive (having found my mid-wheel drive Quantum to be less capable over rough terrain).

I received a voucher from NHS Wheelchair Services to the value of £1750, and a £2,500 grant from the Joseph Patrick Trust.

The total cost of the chair was just over £7,000. A huge expense, but compared to most other powered wheelchairs on the market, the You-Q Luca is definitely one of the cheapest options!

I really wanted flip-up armrests on my new wheelchair to make transferring easier. However, over the past year, the soft foam pads on the armrests have slowly disintegrated.

Bearing in mind how expensive this equipment is, and how long it took to raise the necessary funds, I take good care of my wheelchair!

I have repeatedly attempted to patch-up the armrest pads with super glue. But they are now in a state of non-repair.

Considering the price and the fact that the wheelchair is only 15 months old, I am really shocked and disappointed with the product.

The wheelchair itself is great. The armrest pads are total crap!

I bought the wheelchair from a company called Better Mobility.

I cannot fault their customer service or the assessor who bought a number of demo chairs to my home to try prior to purchase. He was very knowledgeable, patient and not at all pushy (as some sales rep’s can be).

However, I find the quality of the armrest pads to be extremely poor.

As you will see from the image below, to replace them will cost an additional £83.40 – a rather hefty sum to replace an item on a relatively new powered wheelchair!

I am reluctant to pay the £83.40 to replace the armrest pads, particularly as they are likely to disintegrate again within a few months. In the meantime, I am left with an unsightly product that is literally falling to pieces.

Please share!

Guest Post | Wealden Rehab ~ Occupational Therapy

Wealden Rehab Equipment Specialists share the benefits
of having an Occupational Therapist in the team

Care equipment specialist Wealden Rehab works alongside in-house and external qualified occupational therapists (OTs).

Our in-house OT, Gayle Cardwell has 20 years experience, benefiting the team with clinical skills that can
be transferred into private practice. The collaboration between care equipment
providers and clinical experts results in a truly personal service.

Gayle offers her knowledge and understanding of both mental and physical health and wellbeing to the product advisors at Wealden Rehab, emphasising the importance of a personal approach being necessary to achieve the best
outcomes.

Assessing each client holistically encompasses the environmental considerations, which improve solutions for installation of ceiling hoists and
more detailed clinical considerations for seating.

Installation of multiple celing hoist units at Foreland Fields School

Upon prescribing a piece of equipment, the occupational therapist must clearly show their clinical consideration. Gayle has devised and shared documents to encourage clinical reasoning when prescribing Wealden Rehab’s most popular
products. The documents are aimed at prescribing OT’s to consider the individual, environment, the task and to help justify the most appropriate outcome for the end user.

Gayle has provided a rigorous training program for all of Wealden Rehab’s product advisors, through individual and group training sessions. Her ongoing program is designed to enhance the assessments and the training they offer to their customers, which brings extra value.

Wealden Rehab recognise the
significance of having an OT in the team and a clinical approach in devising and delivering training for OT customers when prescribing Wealden Rehab products. We have observed increased confidence, greater understanding from OT’s in the
set-up and recommendation of our products, resulting in improving the end users
experience.

In the future, Wealden Rehab will be adding to the range
of products and, with specialist input, Gayle will be able to critique and share her clinical knowledge regarding new products. This will surely have an impact on the quality of life of many users, which is, Gayle says, ‘At the heart of
everything we do.’

Ceiling hoist installation by Wealden Rehab at the Chiltern School

Many thanks to Wealden Rehab for providing this guest post.