KidsAudiologist

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Over the years this is a question I have heard a lot at NDCS. Recently I notice that additionally more families are being asked to pay for copies of test results and letters when they request them (for example when they apply for Disability Living Allowance). A symptom of the increasing financial pressures that the NHS is under I suspect.

The answer is that The NHS Plan (2000) made a commitment to patients/carers to receive copies of all letters written about them (p89). This was followed up by Copying letters to patients: good practice guidelines (2003).

So parents have a right to be offered copies of letters between clinicians that are written about their children. This guidance says that raw data (test results) should be explained in person and not copied to patient and technically an audiogram is ‘raw data’. They therefore don’t have a right to copies of the audiogram/other test results. However, provided parents have been given a proper explanation of what they mean then most welcome having copies themselves and most audiologists are more than happy to print off an extra copy at the time of the appointment. My feeling is that parents really should be given copies of audiograms with full explanations.

If parents haven’t been given an audiogram or letter that they need for another purpose (for example their DLA application) then the NHS is legally entitled to make a ‘reasonable’ charge for providing copies of anything in the patients files that isn’t already a ‘right’ for them to have. The charge should cover admin time, photocopy and postage charges.

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My Life, My Health Logo

Today saw the launch of  My life, My health – a call on GPs and surgeries to be more deaf aware and ensure deaf teenagers get the health support they need. The My life, My health campaign has been developed by the National Deaf Children’s Society and its Young People’s Advisory Board, is supported by the Royal College of Paediatricians and Child Health, and is the first health campaign of its kind led by deaf young people. More than 200 deaf children and young people from across the UK were consulted to find out about their experiences of using health services, including visiting their GP.

The findings, published in a new report, suggest there is currently a worrying lack of deaf awareness in GP surgeries. Many health care professionals do not know how to communicate with a deaf child or young person. Surgeries do not always provide deaf friendly services, such as the option to book appointments by text message, or ensure sign language interpreters are available.

Findings also suggest deaf teenagers struggle to know when their name has been called, or understand what is happening during their appointment. Other deaf teenagers lack confidence in managing their own health care appointments.

Lucy Read, Head of Children and Young People’s Participation at the National Deaf Children’s Society, said: “Young people have the right to high quality, accessible health care services. However, this is not always their experience and certainly not for those from vulnerable groups, such as deaf teenagers. There are 45,000 deaf children and young people in the UK and it is unacceptable that their health should be compromised simply because they are deaf. It is vital they receive the right health support from an early age, as this also ensures they can go on to become independent adults.”

Dr Hilary Cass, President, Royal College of Paediatrics and Child Health said: As child health professionals, we have to get better at communicating with deaf teenagers. Simple steps such as making information more accessible can make a real difference to the lives of these young people.

“It’s shocking that too many deaf young people are at risk of poorer health outcomes as adults simply because they are deaf. There is no reason why, with the right support, deaf teenagers can’t be as healthy, informed and independent as other young people. This report and its recommendations provide a timely reminder that there is still a way to go to ensure that deaf children and young people have more voice, choice and control over their healthcare.”

The My life, My health campaign highlights three key areas that need to be addressed: better deaf awareness; improved access to information and ensuring the right communication support is in place; supporting deaf teenagers to become more independent in managing their own health care.

The National Deaf Children’s Society and its Young People’s Advisory Board have created a range of resources for GPs, deaf teenagers and their parents, including top tips for GPs, and a wallet sized card that deaf teenagers can show their GP with details of their communication needs. More information, including a campaign video and resources, can be found here.

Follow the day’s events on Twitter at #mylifemyhealth

(Source NDCS Press Release 4th February 2014)

NDCS are calling on the Department for Education to intervene to protect specialist services for deaf children as a matter of urgency. We know that local authorities are cutting these services to save money, without being transparent about their decisions and actions. These services are not a luxury. They are vital to deaf children’s education, health and wellbeing.

We need 100,000 signatures. Please sign today and share with your friends and family. Thank you.

CLICK TO SIGN HERE!

Protecting specialist services for deaf children

Update: Netbuddy has now merged with Scope. For more information on learning disabilities and hearing loss see new post here.

I’ve been working with the fantastic Netbuddy website which is full of handy tips and bright ideas from parents, carers, teachers and therapists with experience of learning disability and autism.

Hearing loss is known to occur in a large percentage of people who have a learning disability. But hearing problems may be unrecognised or undiagnosed because behaviours associated with hearing loss may have been thought of as being part of the learning disability, or because local audiology services are not accessible to them.  Unrecognised and unmanaged hearing loss can cause or contribute to speech or language delays, difficulties learning and reading, and cause difficulties communicating with others. Hearing loss can therefore have a significant impact and exacerbate the effects of an individuals learning disability.

So this week we launched a new Audiology Info Pack giving information on the impact of undiagnosed or unmanaged hearing difficulties, signs of ear or hearing problems to look out for, and top tips for parents and carers. Netbuddy also have an active forum to ask questions and get support from other families, including an ‘Ask the expert’ section where professionals will reply to your queries. Catch me here if I can help.


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