We met a lovely lady from Northern Ireland at a Molly Watt Trust ‘In it Together’ event in Edinburgh in October 2015, she has been a hearing aid user since she was 4 years old and was managing very well.
At that particular event we were very fortunate to have a presentation from GN ReSound’s Graham Roberts who was able to share with us the many impressive hearing aids and products available from the supplier.
That presentation together with Molly’s in depth and ongoing testimony of her GN ReSound LiNX² and how they have enhanced and enabled her life led to an influx of enquiries about how and why these enabling smart aids are not available to those living with Usher Syndrome (deafblindness), particularly as they offer far more than most hearing aids provided by the NHS.
It is fair to say everybody at that event, particularly those using hearing aids where very interested in the enablement smart hearing aids can provide.
Molly coped with standard Phonak hearing aids provided by the NHS until she was 20 years old, however, from 14 years old when she became registered blind, deafblind she struggled and the reason for this in the main was because of her blindness.
For 6 years Molly insisted her hearing had deteriorated even though test after test showed her hearing, thankfully remained stable.
In actual fact what had happened was her ability to lipread, to use facial expression and body language had gone along with her sight, her ability to access sound and communicate had dwindled, demonstrating just how much the deaf rely on their eyes to hear. In other words she could no longer ‘fill in the gaps’ that her eyes had enabled.
It is a fact that the deaf hear with their eyes.
GN ReSound LiNX² provide a hearing experience those who have experienced really benefit from. They provide an incredible clarity of hearing, they enable directional sound meaning that whilst Molly is blind she can now turn towards a sound, something she could not do with her NHS provided Phonak hearing aids, she can also identify not just where sounds are coming from but most importantly she knows the sounds of danger - just imagine how important that is to safety for the deafblind.
These hearing aids have incredible bluetooth connectivity to iPhone and applewatch, also android devices giving the ability to many deafblind to access aurally things they could only dream of previously. Using a telephone as a telephone for the first time ever is most certainly a huge positive.
Not only can they be adjusted be independently adjusted but enable a very personal hearing experience and in so doing bring great confidence and independence.
Our friend from North Ireland was one of many desperate to have access to GN ReSound LiNX² and indeed has asked her NHS audiology department, their response was somewhat bizarre - an appointment with the Cochlear Implant Clinic!
Cochlear implant is amazing technology for the deaf, however, not only is it not for everybody it is also incredibly intrusive, expensive and most importantly not what the patient wants why not consider more enabling hearing aids which happen to be a fraction of the cost.
Figures suggest the cost of 1 cochlear implant would be close to the cost of 10 pairs of best quality smart hearing aids!
There are lots of people who have been hearing aid wearers a long time and like Molly have gotten on very well with them but now need more as Usher Syndrome/ blindness looms close.
GN ReSound have a variety of hearing aids including the ENZO2 for those with a profound hearing loss and whilst they are the creme de la creme of smart hearing aid technology their cost in comparison to cochlear implant is very reasonable.
Cochlear implant involves surgery, it is considered that deafblind people should have two implants to enable directional sound for safety and rightly so, directional hearing is a must for the deafblind, safety is imperative for all, whatever hearing aids worn.
Most get one implant at a time so often two surgeries after each substantial aftercare and rehab at huge cost.
I’m not saying this shouldn't be the case, of course it should where appropriate, however not every deafblind person wants such invasive surgery preferring an alternate option.
Patients should always have a say in their care as it tends to be them who are the real professionals and who will have done the research based on their condition.
I know there is a long and in depth assessment for cochlear implant and so there should be but surely every patient’s individual requirements should be considered?
My friend in Northern Ireland was told there is a 3 year waiting list is this acceptable? Why not consider best hearing aid options?
We continuously hear that our NHS remains financially fragile, that it needs more funding but very rarely do we hear about solutions, about genuine savings that do not include reducing staff - surely this scenario has to be seriously considered
I would like to say our friend in Northern Ireland’s scenario is unique but sadly it is not!
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.