Sense Work Towards Equal Access to Healthcare for the Deafblind

I was recently asked to write a SEND travel article for the Telegraph. After I had picked myself up from the floor (I am after all neither a travel expert, nor the most knowledgable on SEND matters) I got stuck into the research phase. I learnt so much, met new bloggers, found out about incredible accessible sites and destinations and stumbled across such charities as Sense who are champions for the deafblind.

Sense organise fabulous holidays and short breaks in England and Wales during the summer for children and adults who are deaf blind but they work towards healthcare, education and equality too.

We all know how vital it is that our children are involved in their healthcare, and understand what is happening and are able to give feedback. The applies whether a child has physical needs, a learning disability or sensory impairments.

Sarah White from Sense has recently produced a report into equal access to healthcare and I asked if she would like to share her thoughts with Special Needs Jungle readers in a guest post.

Sense clients and volunteers on holiday at Rosliston Forestry Centre near Burton-on-Trent, 26/10/15. © Mike Pinches
Tyrese on holiday for deafblind children at Rosliston Forestry Centre near Burton-on-Trent, 26/10/15. © Mike Pinches

Equal access to healthcare

Sarah White, Health Policy & Partnerships Manager, Sense

The likelihood is, as a parent of a child with disabilities you will be visiting healthcare services frequently. These trips can be stressful at the best of times, but if you have a child who is deafblind, the resulting difficulties in accessing information in an accessible format and securing adequate communication support can make a visit to the local GP surgery or hospital a daunting prospect.

Today, Sense publishes a new report highlighting the health inequalities and barriers facing deafblind people accessing healthcare. It comes ahead of the implementation of the Accessible Information Standard on July 31st, and stresses the urgent need for all health and social care providers to deliver a more accessible service for patients with sensory loss.

No one should leave a doctor’s appointment without understanding what has been discussed or be left with a prescription they are unable to read, yet this is a regular occurrence for many of the deafblind people we support. One in two (56 per cent) deafblind people have left a GP appointment having not understood what had been discussed. More than three quarters (85 per cent) of deafblind people don’t get information about their healthcare appointments or follow up correspondence in a format that they can access. Most reported that they needed to rely on someone else to read their letters for them so that they could know what was contained in them.

The Accessible Information Standard marks a once in generation opportunity to address these issues. It sets out what health and social care providers must do to meet the information and communication needs of those who access their services.

There are 5 key steps that providers must take:

  1. Identify the communication and information needs of those who use their service
  2. Record the communication and information needs they have identified clearly and consistently on the individual’s record.
  3. Have a consistent flagging system so that if a member of staff opens the individual’s record it is immediately brought to their attention if the person has a communication or information need.
  4. Share the identified information and communication needs of the individual when appropriate.
  5. Meet the communication and information needs identified. For example, send an appointment letter in Braille or book an interpreter for an appointment.

The changes outlined in the new Standard are often small and inexpensive adjustments, but can make a world of difference for a deafblind person visiting their local GP or seeking social care support.

The Standard applies to adult services, but the hope is that the new NHS England guidelines will change the culture and practice of health and social care provision across the board, to the benefit of everyone.

If you have a child, you may currently be happy to manage their healthcare. However, as they grow older you are likely to want to involve them further in appointments so they can fully understand their condition and learn the skills they will need to manage their healthcare as they transition into adulthood.

As part of our research I heard from Victoria Dibba, mother of an 11 year old boy called Tyrese (pictured) who was born with a rare genetic condition called CHARGE – and as a result he is profoundly deaf and has vision in one eye. She explained how she has had to fight constantly for the provision of a BSL interpreter at hospital appointments and often turns up to find that one hasn’t been booked. Understandably she is frustrated with the constant assumption that she should be acting as an interpreter, despite the fact that medical conversations are complex and beyond her BSL communication skills. Unfortunately we hear stories like this all too often.

We are calling on providers to implement the Standard across the board and ensure that everyone’s information and communication needs are met in order to ensure they are able to be active participants in decisions about them.

Sense will update the people we support on the level of service they should expect to receive moving forward, and we will continue our work with NHS England and health and social care providers to ensure a fully accessible healthcare system is delivered.

For information on our report please read the Sense UK Health Report.

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Hayley Goleniowska
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Hayley Goleniowska

Parent Advocate/Blogger at Downsside Up
Hayley Goleniowska is the author of the popular blog, Downs Side Up, where she writes about life with her daughters, one of whom has Downs Syndrome, and other issues surrounding disability.
Hayley Goleniowska
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