A A A Accessibility A A A A

Molly Watt Trust

Saturday, 28 January 2017 19:13

Disjointed Care or Digital Data?

Written by  Molly Watt
Rate this item
(1 Vote)

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services.

It certainly got me thinking and discussing in depth my journey of care with my Mum, the more we discussed the more obvious it became that there are really important communication issues amongst the many professionals connected to my care and wellbeing.

It had not dawned on me that since being diagnosed deaf at 18 months old and then deafblind at 12 years old just how many people, professionals, departments, agencies have been involved with me and on so many levels and how clear it is that there is a very serious lack of communication between them all!

Of course everybody has a GP, I then had an audiologist, a speech therapist, a teacher of the deaf, a teaching assistant and a social worker - I believe some of these did communicate with each other.

Then on diagnosis of Usher Syndrome I then had all of the above plus a teacher of the blind /VI, a teacher of the deafblind (eventually) an ophthalmologist, eventually a social worker but not trained to work with the deafblind and an occupational therapist - it is pretty clear these professionals were not working together.

Also involved was Department od Work and Pensions (DWP) and at one point Job Seekers Allowance (JSA) these two clearly did not communicate with the professionals involved in my care.  

Strangely all of them would have details of me and my condition, each needs to be fully aware of my wellbeing, my needs and support required and yet everything is so disjointed.

Each writing to each other for information, often having to check or confirm information before there can be any positive action.

Why are my details not simply amalgamated digitally?  I am not an expert on Data Protection but I'd be more than happy to give permission for my medical data to be shared amongst the various professionals deemed to be responsible for my care rather than me having to all too often explain my situation to all.

I am fortunate, my communication skills are good and I have a good understanding of my condition, however, some struggle to communicate and get across important information or need to rely on interpreters to communicate their needs.

I understand we cannot expect every professional to know about every specific condition, particularly the ones like my own, not as rare as some suggest but a condition that does vary from person to person.

Digital could make life so much easier in these situations and so much less time consuming.

To give an idea of the difficulties I have encountered as a result of having more than 12 professionals involved in my care please read on:

The longest relationship I have had was with my NHS audiologist, she was advised I had gone from deaf to deafblind, that I had Usher Syndrome, it made zero difference to how she treated me, for instance she would use gestures I couldn't see when communicating with me, take me into bright rooms that blinded me further.  These actions and behaviours would have been perfect whilst I was just deaf but communicating with me as a deafblind person should have different and my condition as a whole been fully considered.  She would write to me with the results of my hearing test in font 10 on white paper with tiny graphs all completely inaccessible.

The receptionists would insist hearing aid batteries be ordered by telephone or in person, I couldn't hear on the phone back then and mobility is never easy when deafblind - none of these requirements considered my situation, but they were the rules!  I had to rely on others!

Then for me there was regular appointments with ophthalmologists and again, expert in their field but they would speak to me whilst looking at their computer screen and point to screens of graphs I couldn't hear them or see what they were pointing at, just bright screens that blinded me!  Correspondence from them did come in a larger font but again on bright white paper I cannot look at, so again inaccessible!

I don't blame these professionals, I don't expect them to know everything about me but I can tell you these scenarios cause stress and anxiety. 

Continuously having to communicate my situation, my condition is exhausting and my communication skills are good, many with my condition struggle with communication, I'm sure for them even more stressful and consider how long these explanations take at each appointment!

Two other unnecessary scenarios that could have been avoided:

The first, I finally got a social worker trained to work with deafblind when I was 18 years old, she spent a huge amount of time getting to know me, understanding my requirements and carrying out a thorough deafblind assessment, pages and pages of information amongst which recommendations for important alterations to my home.  

The deafblind assessment should have been carried out as soon as I was diagnosed, https://www.gov.uk/government/publications/deafblind-people-guidance-for-local-authorities it took six years and as if that wasn't bad enough the report was presented to Occupational Therapy (OT) for them to advise I looked ok and therefore all requirements recommended in my DeafBlind Assessment were ignored!

Thankfully my family, with the help of Sense took the matter further and another three years later the alterations were carried out.

The second scenario and one many with my condition will be aware of are the never ending assessments insisted upon my Department of Work and Pensions (DWP) for Disability Living Allowance and more recently Personal Independence Payment (PIP) again carried out by professionals who cannot possibly know about every possible condition and as a result regularly make inappropriate awards.

How much time do all these appointments and assessments take, how much do they cost, how much distress do they cause patients like myself.

How easy would it be to have all my data on a screen, on a memory stick, even on my smartphone for me to share with the parties that need to know all the facts about me.

There wouldn't need to be assessment after assessment by people who really do not know my situation.  I wouldn't have the stress and anxiety of continuously explaining myself and taking unnecessary time that could be better utilised.

My experiences make it very obvious there is little communication amongst the various departments and teams which clearly makes life unnecessarily difficult for us all.

Digital data seems so obvious, makes life so much less stressful for the patient and frees up time for the professionals to do what they do best and treat patients.

Read 3100 times

 


  

Donate

 

To support the work of MWT please click on any of the Donate buttons below or alternately you may send a cheque made payable to Molly Watt Trust and sent to Queen Anne House, 25-27 Broadway, Maidenhead,Berkshire, SL6 1LY.

All donations and support are gratefully received.

Please complete this form if applicable so that we may claim an additional 25% in gift aid.

 

 

Donations for the Molly Watt Trust help those with Usher Syndrome

Molly Watt Trust - Helpling those with Usher Syndrome

Paypal Donations to the Molly Watt Trust

 


 

 

Recent Blogs

The love of Unis

Unis came into my life when I was 16 years old.  Looking back I know I did not thoroughly embrace her, I also acknowledge the constant bullying and questioning of...

Read more...

A Visit to ATOS London Offices

I recently visited the ATOS London Offices, for an appointment set up by my Mum, Jane. We were there to meet with Dr McKillop to discuss varying issues and negative experiences...

Read more...

Mario's day to day life with Usher S…

My day to day life with Usher Syndrome (Retinitis Pigmentosa) is a constant fluctuation between moments where I can ‘get by’ and moments in which my disability presents real challenges...

Read more...

Disjointed Care or Digital Data?

I was delighted to be invited to meet with Digital.Health London to discuss a variety of things relating to my journey with the NHS and the various services. It certainly got...

Read more...

Bali - Sound Sensations

At the end of my work and networking trip to the other side of the world, Mum and I decided on a a trip to the beautiful island of Bali...

Read more...

Usher Syndrome / Christmas Challenge…

Hello, my name is Josh Parker and I have Usher Syndrome type 3. Most of you reading this probably already have an idea what Usher Syndrome is, so I’ll keep...

Read more...

A toolkit to enable deafblind to acc…

San Francisco in November was an amazing experience, not just because I got to speak in Silicon Valley to some of the very top people in digital at Qcon I...

Read more...

Singapore Airlines - Never again

I blogged about my not just poor but disgraceful treatment by Singapore Airline cabin staff on 13 November during my flight, Heathrow to Singapore.  I very unpleasant start to travel...

Read more...

Singapore Airlines a Very Unpleasant…

13th November, the start of my adventure to the other side of the world.  It had been just two days since Mum and I had come off a plane from San...

Read more...

Deafness makes you more blind

My name is Colin Hetherington and I suffer with Usher Syndrome which is retinitis pigmentosa (blindness) which gives me all sorts of daily troubles from glare tonight blindness, headaches flashing...

Read more...

Facebook - Anti Social Media!

Dear Facebook I am a 22 year old who struggles with accessibility. I am registered deafblind, however, I was not born deafblind but deaf.  What that means, to you, is that I...

Read more...

iOS10 Accessibility

Dynamic text galore! As we all know Apple products, get fairly regular software updates.  I had read and heard a few things about iOS 10, but was intending on waiting to experience...

Read more...

My Trip to Parliament

My partner Lyn decided that we should head for the big smoke to celebrate my 50th Birthday.  We are both have guide dog owners and both love London. I used to...

Read more...

University: To Listen, to Learn, to …

I have been asked over and over why I didn't complete my initial dream to be a primary school teacher and for some time it was a sore subject, however...

Read more...

I was hopeful but disappointed

My hopeful journey into the Wireless Bluetooth hearing aid world.   With Danalogic ifit cs71w hearing aids, Resound phone clip+ and a mini mic. I started off by asking my local NHS ...

Read more...

Being an Usher Mum

Being an Ushers Mum.  In 2011 I went for routine eye appointment and after a small discussion, the optician wanted to refer me for some tests.  I immediately had an in house...

Read more...

BA listened please listen more

After my recent report regarding very unacceptable treatment whilst flying British Airways Premium Economy to Las Vegas in May I’m very pleased to announce that they have at least changed...

Read more...

Centre Stage Applewatch

AppleWatch and smart technology are brilliant for people with Usher Syndrome!  I have Usher Syndrome, which means I was born deaf and in the last ten years I have lost most...

Read more...

Unacceptable Audiology

I have Usher Syndrome, I am deafblind and my condition is degenerative. The fact that it gets worse and my abilities change all the time means that I have to make...

Read more...

Life is a Rollercoaster

As part of my ‘rollercoaster ride’ I have experienced huge ups and downs over the years. A husband and four children comes with challenges but nothing out of the ordinary accept...

Read more...

Molly Addressing Accessibility with …

My outward journey to Las Vegas was nowhere near the way it should have been. The necessary call to ‘special assistance’ had been made by my mum prior to the trip...

Read more...

Usher to Usher

I hope you don't mind but after researching usher's syndrome and RP I came across your blog and I wanted to introduce myself. My name is Bethanie (or Beth), I'm...

Read more...

Applewatch for Award Winning Paracli…

Hi I am John Churcher and I have Usher syndrome type 2. I have always had a hearing loss and was diagnosed with retinitis pigmentosa at the age of 14...

Read more...

Safe and Secure with Accessible Ring…

About a month ago The Ring Video Doorbell was brought to my attention and I was asked if I'd like to try it. I love technology, particularly assistive and enabling technology. What...

Read more...

Global Accessibility Awareness Day 2…

Usher Syndrome for me means my whole world is accessed via accessible assistive technology. A year ago to the day I was fitted with Resound Linx2 hearing aids.  It has been...

Read more...

Learning from each other - 'In it To…

Walsall 2016 'Hear no. See no, Techno' Jo Milne, Colin Hetherington and Me. Once again we were blessed with a room full of people all on similar journeys.  With Usher Syndrome or RP...

Read more...

Ready to meet others with Usher Synd…

I decided I would like to meet some fellow ushers as never met anyone and my sight has been steadily getting worse . I had support worker for blind visit...

Read more...

Why Access to Social Media Matters

I have been asked many times what my favourite social media is and why and my answer is always Twitter. The reasons I like Twitter are firstly from an accessibility view...

Read more...

What is in a logo

We are often complimented on our logo. Molly designed the logo for our charity. Below she describes how and why she designed it. The first thing you will notice is the Molly Watt...

Read more...

Applewatch - Thank you Molly

My son read Molly's applewatch blog to me last year.  She made everything sound so easy and to be honest I didn't believe it. My son kept on and and and...

Read more...

San Francisco Adventure

San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister...

Read more...

Effortless Applewatch One Month In

So I've now had my Watch a month and the best way I can describe it is 'Effortless.' When I first got it all in its beautiful packaging it felt like...

Read more...

When a Picture is more than a Pictur…

Taking a photo to me is not just a picture, its capturing a moment, capturing sight I no longer have.   I take a picture and then take it apart to...

Read more...

Applewatch Awesome but Hearing Aids …

I recently received an applewatch from The Molly Watt Trust, via their GlobalGiving project. I love gadgets. I have ushers syndrome type 3 which is gradually robbing me of both my...

Read more...

Applewatch Accessibility and Connect…

To quickly introduce myself, am Colin and I have Usher Syndrome type 3, the rarest of the Usher types.   I recently received a letter to collect a package from the...

Read more...

A Simple Tap or Touch can Mean so Mu…

Something I am often asked at my presentations is what is the best and most acceptable way to approach or get the attention of a deafblind person. My answer would be...

Read more...

Linx2, Earbuds, Earpods - Definitely…

I recently read a piece virtually comparing hearing aids with earBuds / EarPods and hearing aids with glasses! I read the piece several times and still thought it strange.  I'm 21...

Read more...

Me, Myself & My Guide Dog x 3 - …

Recently I was invited to appear at the Sense Awards at Kings Cross London.  I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have...

Read more...

Josh Dealing with Usher Syndrome Typ…

Josh’ Blog for The Molly Watt Trust Hi, I’m Josh. I’m 22 years old and I have Usher Syndrome type 3. I was born with normal hearing and vision, unlike most...

Read more...

The Jekyll & Hyde of Usher Syndr…

I had never heard of Usher Syndrome until I worked with a girl who has it.   If I’m honest I saw her come in and out with her guide dog...

Read more...

Can Deafblind Access Wayfindr?

An audible App or program for the blind, accessible to deafblind, using hearing aids? There was a time when accessing such a thing would have been impossible and in my lifetime...

Read more...

"Access to Tweet, Tweet to Acce…

I was delighted to see that at last Facebook allows dynamic text for those of us who use iOS and rely on it. Finally those who had been isolated from family...

Read more...

A "Resounding" Success

When I wrote my Applewatch blog back in April this year, I had no idea of the interest it would generate, nor the amazing people or companies it would lead...

Read more...

Please, Please, Please Consider All …

I was prompted to write a blog on reading this quote:  “For people without disabilities,technology makes life easier.  For people with disabilities technology makes things possible” (IBM training manual 1991). That quote...

Read more...

Edinburgh Social Event 3 October 201…

Best Western Kings Manor Hotel, Edinburgh Saturday 3 October 2015 was a great success. It was brilliant to see old and new faces and a time to share some news and...

Read more...

Usher Syndrome - The Importance of A…

I have now realised after many years that always trying to fight Usher Syndrome certainly does not work. I don't know if it's a pride thing or that I am just...

Read more...

Usher Syndrome Awareness

Usher Awareness Day Sept 19th 2015 Dominique Sturz, Usher Forum Austria My name is Dominique and I am the mother of a 19 year old daughter with Usher Syndrome, she is a...

Read more...

Trials and Tribulations of an Usher …

As some of you may know, Jake our sixteen year old son was diagnosed with Ushers Type 2a 3 years ago, at the time Trev and I thought our world...

Read more...

I can no longer hear with my eyes - …

I was recently talking about cochlear implant and was told the reason those of ANY age with Usher Syndrome (deafblind) that are profoundly deaf and wanting cochlear implant and who...

Read more...

We Own The Equinox 19 September 2015

Our sincere thanks go to Mark Dunning and his team at the Usher Coalition for their hard work in putting Usher Syndrome on the calendar thus resulting in so many...

Read more...

Hear No, See No, Techno!

I recently read about somebody I know who has Usher Syndrome and had got into a very scary situation. Having Usher Syndrome this sort of thing is very easily done. An accident...

Read more...

"5 degrees and Me"

Another major hurdle, I've reached 21 years old and I still have "5 degrees" of vision still remaining. I know it doesn't sound great and possibly terrifying to many but...

Read more...

The Amazing Positive Power of "…

Towards the end of last year I started communicating with Dan via Twitter.  Dan was working with Radio 4's In Touch and was keen to get me on radio to...

Read more...

Communicate Don't Assume

Up until 12 I believed I could do most things, why not, I was deaf but with hearing aids could hear.  It did make communication an issue sometimes, group settings, noisy...

Read more...

A Mum's Numb Despair to Pride in Sho…

How does a mum feel when she's told her 12 year old daughter is set to go blind - NUMB. First things first, get head around the condition, hate it with...

Read more...

Pushing My Boundaries

Pushing Boundaries This might not be seen as pushing boundaries for some....... However,  for myself it was like jumping out of an aeroplane! I have always admired a local photographers work and I...

Read more...

Access Illegally Denied - Guide Dog …

I was matched with Unis when I was 16 and over the past 4 years have been subjected to terrible discrimination simply because people either do not follow the law...

Read more...

C'est la Vie

On February 24th 2004 aged 22, my life changed dramatically in one day.  I went from being fully independent living life,  being care free, I had a vague  plan as...

Read more...

Asking for Help

One of the hardest things for anyone to do, is admit they need help.  It doesn't matter if you have a disability or not, if you feel like a burden...

Read more...

Flying as Free as a Bird

I had wanted to challenge myself for The Molly Watt Trust for some time. For the 4 years since setting up I have kept busy with Keynote Presentations for the Charity...

Read more...

 


 

 

Bradley Timepiece - Usher friendly timepiece - Molly Watt Trust

©2017 molly watt trust, registered UK charity 1154853