PROMOTING APD

PLEASE NOTE: The documents on this website are in black ink on white paper. For those with dyslexia or visual processing difficulties, it is advised to print the documents on recycled paper, to minimise glare, or on paper in a colour that you find easy to read. You can also change the background colour on .pdf and Word documents to make them more accessible.

ARE YOU APD-AWARE?

Do you run a UK disability organisation/charity? People with APD normally have co-existing conditions, so your members might also have APD. Please message us if you are interested in sharing our website and APD details, and we will share yours as being APD-aware. Contact: apd.support.uk@aol.co.uk

THE WAY FORWARD

BEING PRO-ACTIVE

APD is still little-known, under-diagnosed and poorly supported in the UK (and internationally). Twenty years ago, APD was not known about in the UK and no testing was available. Awareness has grown since then, but not enough. A full battery of tests providing reliable diagnosis of APD has been available in the UK since 2002. However, only a handful of NHS hospitals/centres choose to use these tests, with others preferring instead to provide unreliable basic screening, and most provide nothing at all. APD Support UK provides a list of the centres that provide full testing, but referral to these testing centres is still fraught with barriers for parents and adults with suspected APD. Too many professionals still do not know about them, or refuse to refer to anywhere outside their local area (instead sending patients for basic screening which may not even lead to accurate diagnosis).

As well as providing information on testing and living with APD, plus online support groups for sufferers and their families in the UK and internationally, APD Support UK aims to actively improve awareness, diagnosis and support for APD in the UK.

We have three main aims.
  • that all medical and education professionals schools should know about APD, be able to recognise the symptoms, and signpost appropriately to full testing;
  • that the amount of NHS testing centres across the UK that provide full testing (not just screening) is increased substantially to allow ease of access to all who need it, and that is provided within a reasonable distance;
  • that all education establishments and workplaces provide the support that each child and adult with APD needs and is entitled to receive.
The time has come to take a more pro-active approach, and we aim to do this by targeting three key areas.

A P D

A is for Awareness: We need to spread information to raise awareness UK-wide, allowing education and medical professionals, employers and the wider community to learn about APD. It is vital that people are aware of what APD is, how it affects people, that it can have debilitating, lifelong effects on communication, learning and work, socialisation and family life. Awareness is about recognising the signs, but it should also include acceptance that the person is not to blame when they struggle at school and at work. Instead, they need patience, acceptance, understanding and support. APD is a medical condition of neurological origin. People need to know that APD is not only inherited but it can be acquired by anyone, at any age. APD does not affect intelligence: people with APD are just as capable as those without it, with the right support. We need to dispel the myth that APD is rare: it affects up to 10% of children (40% if they also have a learning disability) and 20% of adults. The chances are that every school, place of work etc. will have individuals with APD, even if they don't know it yet. 

P is for Professionals: We aim to spread knowledge about APD to those professionals that have never heard of it, or don't understand it. Ideally, all medical and education professionals should know how to recognise signs of APD, signpost parents and adults with APD to full testing when suspected, and be able to share accurate information about APD (information which this website provides). One of our recent projects has shown that all the local authorities in England and Wales know about APD yet what support is available is sporadic and largely generic rather than tailored. 

D is for Diagnosis: Accurate full diagnosis is essential to identify how each person is uniquely affected They need this information to be able to access tailored support relating to their individual APD profile and any/all other conditions. Diagnosis is not the end goal: it should always lead to providing the lifelong reasonable adjustments that the person with APD needs and are legally entitled to. We need more NHS local centres providing full APD testing to an accetpable standard. We currently have just five NHS APD testing centres in the UK, only three are for children (and most of those have restricted access), and two for adults for the whole of England and Wales. There are none in Scotland or N.I.  It is also vital that recommendations made in diagnosis reports are implemented, including the provision of assistive technology such as FM systems. They should not be just taken as suggestions which can be ignored because schools/colleges.universities and employers have a legal obligation to provide them and it is vital that they fulfil that obligation.


HOW YOU CAN HELP

APD Support UK is made up of a small group of unpaid volunteers with their own families, jobs and other commitments. We can only do so much and we need your help. There are three ways that you can do this.

1. The easiest thing anyone can do to help is to share this website with schools, GPs and other medical professionals, your employer and online SEN groups.  https://apdsupportuk.yolasite.com/

2. The APD Support UK press release below explains what we do. Please share it. Add it to SEN/disability newsletters, groups and websites, share with schools and employers, send it to your local paper, or post a link to this page on social media. Also, our new "APD factsheet".

3. The letter templates below are available for you to use to promote the needs of children and adults with APD and families affected by this disorder. Please print and use them. They can all be copied and pasted into an email so it won't cost you anything (don't send as an attachment; most organisations send them to their spam folder). Feel free to share a link to this page with other parents, work colleagues etc.

BE YOUR OWN ADVOCATE

The best people to share awareness of APD and advocate for the rights of those that have it are those that have it themselves or their families, friends, and the professionals who support them. This condition might affect you, your child, your loved ones, your friends or colleagues, or your patients. We can only provide you with the information, advice and tools to help you to advocate: to stand up for your rights and those of your loved ones. If you are affected by APD or want to help those that are, please share this information, use the letters to lobby for better support and localised full testing. One letter can make a huge difference. When you advocate for yourself and your child, you also advocate for everyone with APD.

We all know that a positive outcome cannot be guaranteed. In the case of requests for reasonable adjustments in education or at work, the recipients might still refuse even though their actions might be unlawful, and you might need to escalate the complaint to the relevant Ombudsman. But more people requesting what they are entitled to will lead to greater awareness of the needs and rights of people with APD. Support in education and at work is a legal obligation, not a choice. Also, more people requesting local full APD testing centres is proof that an urgent need exists for them. We just need to ask.

Together, we can make a difference.

Alyson Mountjoy, Chair APD Support UK.

DOCUMENTS TO SHARE

APD SUPPORT UK PRESS RELEASE

Our press release is available below as a poster and a.pdf file  for you to read, print and email. Please share wherever you feel it will make a difference - at school, at work, with your local newspaper, MP, council etc. We need UK-wide local testing centres to help deal with growing waiting lists, and full support in education and at work. Anyone, anywhere, might be affected by APD at any age. 

APD Press release.pdf APD Press release.pdf
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NEW APD SUPPORT UK FACTSHEET

A one-page document containing a brief list of basic facts about APD. It is intended to signpost those who have APD to this website, and those who suspect APD, or simply want to learn more about it. Please share with anyone you feel needs to know more about APD. This is available below as a .PDF document and a .JPG image.

APD Factsheet-.jpg APD Factsheet-.jpg
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APD Factsheet.pdf APD Factsheet.pdf
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LETTER TEMPLATES

If we want anything to change with regard to provision of local specialist APD testing centres, and support, we all need to ask for it. You can help by adapting the following letter templates by adding your own personal information. They are in Word format to allow you to do that. There are letters to:
  • request more local testing to the standard used by the recommended full APD testing centres;
  • complain if you, or your child has been refused a referral for APD testing;
  • complain if you, or your child has been refused reasonable adjustments or support in education, or at work.
More may be added over time: keep checking back or email if you feel there is an issue not covered by these templates that will affect a lot of people with APD. apd.support.uk@aol.co.uk

N.B. Please remember to delete any sections included in the templates for guidance before sending.

APD TESTING PROVISION TEMPLATE 2022

This template is for you to adapt and send to your local Clinical Commissioning Group/CCG (England) or Local Health Board/NHS Trust (Wales) which decides on the health service provision in your area.


You can also send it separately to the CEO of your nearest hospital that provides hearing services/ENT/audiology, also to your, MP, GP, local Council Leader/Councillor, audiologist etc. 


Please read the "Notes" page at the start.

Please see the links opposite to find the email address for your local CGGs or LHB/NHS Trust your MP (and your Welsh Assembly/Senedd Member if you live in Wales).


APD TESTING PROVISION TEMPLATE 2022.docx APD TESTING PROVISION TEMPLATE 2022.docx
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WHERE TO SEND

Local Clinical Commissioning Groups/CCGs in England:https://www.england.nhs.uk/ccg-details/


Local Health Boards/NHS Trusts in Wales:  https://tinyurl.com/2p8r68ph

Search for your MP’s parliamentary email address: 

https://www.parliament.uk/get-involved/contact-an-mp-or-lord/contact-your-mp/

Search for your Welsh Assembly/Senedd Member’s email address: https://senedd.wales/find-a-member-of-the-senedd/

REFERRAL REFUSAL TEMPLATE

If you live in England and you or your child have been refused a referral for full APD testing at a testing centre of your choice, this is a letter for you to adapt and send, quoting NHS Patient Choice (this does not apply in Wales). Please read "APD testing centres October 2021" on the "APD testing centres" document on the Diagnosis page. (screening is not recommended).

A LIST OF ALL LOCAL CLINICAL COMMISSIONING GROUP/CCGs IN ENGLAND
https://www.england.nhs.uk/ccg-details/
APD REFERRAL REFUSAL ADULT.docx APD REFERRAL REFUSAL ADULT.docx
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CHILD APD REFERRAL REFUSAL TEMPLATE.docx CHILD APD REFERRAL REFUSAL TEMPLATE.docx
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REASONABLE ADJUSTMENTS (CHILD)

This is a letter for you to adapt and send to your local education authority, to complain if you, or your child has been refused reasonable adjustments or support at school or at work. N.B. You must have previously have asked for these and allowed time for them to be provided them, then made a complaint to the school using their complaints policy. Do not use this letter unless that process has been concluded and you did not get the outcome you requested.You can also use this letter if what is already provided is inadequate or inappropriate for your needs.
REASONABLE ADJUSTMENTS (child).docx REASONABLE ADJUSTMENTS (child).docx
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REASONABLE ADJUSTMENTS (ADULT)

This is a letter for you to adapt and send to complain if you have  been refused reasonable adjustments or support in further education, or at work. N.B. You must first ask for reasonable adjustments or support and allow time for them to provide them before making a complaint. You can also use this letter or if what is provided is inadequate or inappropriate.
REASONABLE ADJUSTMENTS (adult).docx REASONABLE ADJUSTMENTS (adult).docx
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CAN YOU HELP?
We have an ongoing "APD Facts" feature on social media on Mondays and Thursdays and upcoming events information is posted when appropriate.Please follow us and share our posts to help raise awareness of APD.

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