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your voiceyour rightsyour choice

'Older People's Voice' Group - members' blog

‘A fall in my flat, after repeated fainting, in late 2023 brought home the full impact of my disabilities and impairments. I suddenly realised I had no way of communicating with any type of emergency service should I need to. The main barrier: the great majority of health care services are only accessible via telephone, something I simply cannot use.

Brief personal introduction

  • Age: 80
  • Disabilities: registration with Westminster Adult Services in 2002 in relation to long term respiratory conditions [Aspergilloma, Bronchiectasis, NTM]
  • Impairments:
    • hand subluxation since 2011 [precludes use of any type of telephone handset]
    • hearing loss since 2018

My lived experience

In December 2022 I  was unable to find a taxi company accepting online bookings. I had to cancel an important neurosurgery/spine outpatient clinic appointment at my local hospital. The temperature had plummeted to 5°C and I could not walk to bus stop or taxi rank. None of the community groups contacted could provide the information.

Hospital Communications: most services are still in breach of the legally mandatory 2016 Accessible Information Standard by failing to provide an email address in addition to telephone number as well as not recording accurately the patient’s communication needs. This results in significant delays for either diagnostic assessment or treatment.

Primary care: I had to change GP practices in order to have my disabilities and impairments recognised and duly recorded. Why GP practices do not record disability registration is a question which needs to be asked. My new GP practice has to be commended for emailing me a screenshot of my Summary Care Record so I could correct errors and signal omissions. But communications remain an interesting issue as not all admin staff seem to be aware of patient’s needs and will often send a “please call the surgery”, not aware patient cannot do so. Whether this stems from a narrow concept and application of privileged access to GP record or lack of training merits further discussion.

Community: too many organisations are still relying on telephone communications thus excluding those with disabilities and impairments. For instance: NHS Care Volunteer Responder has no email functionality. This means I cannot ask a volunteer to collect my repeat medications during temperature extremes. My GP has processed the referral to NHS VR but in practice no assistance is possible since the organisation restricts access to those who can use telephony.

Third sector organisations: many basically exclude those who cannot use telephony.

Discovery (and hope!)

BT Relay UK was a most important discovery. Basically, the product was designed for those who are hard of hearing and need a “read and type” mode of interaction. But it can also be used by all those who cannot hold, touch, use a smartphone [tremors, Parkinson, rheumatoid arthritis, osteoarthritis, poor vision and many other conditions] but with the help of a laptop [or large screen plus assistive keyboard] can actually control the small device [which can be in a different room]. I was involved in testing the product with BT and this worked very well. What is now needed is a wide- reaching awareness campaign to ensure all health care providers and patients with impairments can use BT Relay UK.

DEMOS/Patients Association’s November 2023 report ““I love the NHS, but…” Preventing needless harms caused by poor communication”” exposed “the fact that poor NHS communication is one the public’s biggest issues with the NHS and a cause of their growing dissatisfaction with the service.” I do hope this important work linking the key issues of Access and Communication across the health and social care ecosystem will serve to inform and support interventions and initiatives to ensure no one, no matter what their disabilities and impairments are, is left behind as is currently the case.

Vison loss: good work has been done to ensure those with vision loss or poor literacy can automatically be offered text-to-speech tools. Some hospitals use ReciteMe, some GP practices use ReachDirect and MS Edge browser offers ReadAloud. All provide translations in many languages.

All we need now is to stop excluding those who cannot use voice telephony.’

Useful links for further reading:

Which report – ‘Access denied: disabled consumers are being failed by poor customer service’

Relay UK