About Down's Syndrome : Down’s Syndrome Association Helpline


Down’s Syndrome Association Helpline: 0333 1212 300

The Down’s Syndrome Association Helpline offers information, support and advice to people with Down’s syndrome, their families and the people that support them. Please call us to speak to one of our Information Officers, who will be happy to talk through your questions or concerns.  Sometimes simply discussing your situation with someone else can be helpful.

The Helpline is open: 10.00am – 4.00pm | Monday – Friday (closed Bank Holidays)


If you would prefer to, you can email us at info@downs-syndrome.org.uk.

The helpline may be closed occasionally during opening times for operational reasons. If this happens, we will give advance notice on our website.


The Down’s Syndrome Association (DSA) has specialist advisers who can provide you with support on subjects such as benefits, social care, education and development, speech, language and communication, additional needs including dual diagnoses, and health.  Our advisers also produce a wide range of resources which can be accessed online.

How you can help us

To help us give you the best advice and support, we ask if callers can:

  • Find a quiet place to talk to us
  • Tell us clearly what your call is about
  • Have any relevant documents and a pen and paper to hand
  • Complete a written referral form if specialist advice or support is sought or help with making a complaint to a Local Authority or CCG for example

This will give us a better understanding of your situation so we can give you the best advice and support.

How we can help

The DSA Helpline can:

  • Answer your questions and enquiries about Down’s syndrome.
  • Provide a listening ear and a source of advice and support for families.
  • Provide information and support on issues such as health, social care, benefits and education for people with Down’s syndrome.
  • Explain how families can access support locally.
  • Direct you to other sources of information
  • Help with complaints to local authorities with regards to their duties under the Care Act 2014

However, there are some things the DSA Helpline line cannot do:

  • Whilst we do have a good understanding of the law, we are not trained to give legal advice.
  • Our staff are not trained in counselling so we cannot provide a counselling service. However, we can offer support and a listening ear.
  • We cannot provide you with an advocacy service.

If we are unable to help you with your query, we will try to direct you to another organisation that can. We are unable to guarantee the service of any other organisations we refer you to.

General Data Protection Regulation and calls to our Helpline

The DSA takes caller confidentiality very seriously and our Data Policy is in accordance with the General Data Regulation legislation(2016). We will not share your personal details with third parties unless consent has been given.

The DSA records personal details of callers and retains these for the period necessary to process your enquiry, We do this because:

  • We can return your call
  • We can send you information
  • We can refer you on to someone else when appropriate and if you ask us to

After which, some general themes of a call may be kept, but personal details are anonymised. We collect statistical information from calls to support the work of the DSA and improve our information line service for future callers and to help inform, our policy and campaigning work. Where a case study is referenced, all personal information will be kept anonymous.

Exceptions to this policy are only made when there is a potential risk to the caller or others, or when required by law. This follows our Safeguarding Children and Vulnerable Adults Policy.

For calls which involve welfare benefits advice, we securely retain certain information for a period of 7 years in order to comply with our professional liability insurance

All our information is recorded electronically using a system which complies with EU and UK General Data Regulation laws.

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