Supporting families and health professionals
What we do
Training
We offer Makaton training to health professionals. When health workers use Makaton it opens the
lines of communication for people with Down’s syndrome and can also reduce anxiety. Makaton is a
language programme using signs and symbols to help people to communicate. We also offer training
on the learning profile of people with Down’s syndrome. For more information or to book onto a
course, see our interactive calendar of events or contact admin@cdssgroup.org.uk
lines of communication for people with Down’s syndrome and can also reduce anxiety. Makaton is a
language programme using signs and symbols to help people to communicate. We also offer training
on the learning profile of people with Down’s syndrome. For more information or to book onto a
course, see our interactive calendar of events or contact admin@cdssgroup.org.uk
New parent packs
We deliver new parent packs to maternity units throughout Cheshire so that parents of babies with Down’s syndrome can access information, advice and services from the earliest point possible in the lives of their beautiful new babies.
As well as providing information, the packs signpost parents to a variety of resources and organisations that may be of use to them.
If you are a maternity professional or Health Visitor & would like more information or one of our new parent information packs please contact us at admin@cdssgroup.org.uk
As well as providing information, the packs signpost parents to a variety of resources and organisations that may be of use to them.
If you are a maternity professional or Health Visitor & would like more information or one of our new parent information packs please contact us at admin@cdssgroup.org.uk
Health literature
We support the national Down Syndrome Association Tell it Right Start it Right campaign to educate healthcare professionals about speaking with prospective and new parents in an unbiased manner. We have produced a Tell it Right Start it Right poster with tips for maternity staff about how to celebrate with parents, empower them and focus on the individuality of each baby.
Please click here for a copy of the poster.
Please click here for a copy of the poster.
Legal support
CDSSG have agreed to purchase an annual retainer with Irwin Mitchell LLP to provide with legal support by email and telephone on any issue falling within the scope of the retainer provided that each issue for which support is requested can be dealt with in less than 30 minutes.
The types of issues covered under this retainer are issues covered by the public law team. A non-exhaustive list is set out below:
Queries about medical treatment, including:
o Refusal by the NHS to provide medical treatment, or to prescribe a particular drug; and
o End of life treatment and care – e.g. disputes about whether the client should receive life-sustaining treatment, or whether a person should be in hospital or at home at the end of their life
Under the terms of this retainer, Irwin Mitchell are only authorised to speak with Julie Duff of CDSSG or another member of staff as nominated by Julie. They are unable to speak with individual parents and families unless a separate funding agreement is entered into which can be discussed depending on the facts of an individual case.
If you wish to access this service, please contact CDSSG initially via admin@cdssgroup.org.uk.
The types of issues covered under this retainer are issues covered by the public law team. A non-exhaustive list is set out below:
Queries about medical treatment, including:
o Refusal by the NHS to provide medical treatment, or to prescribe a particular drug; and
o End of life treatment and care – e.g. disputes about whether the client should receive life-sustaining treatment, or whether a person should be in hospital or at home at the end of their life
Under the terms of this retainer, Irwin Mitchell are only authorised to speak with Julie Duff of CDSSG or another member of staff as nominated by Julie. They are unable to speak with individual parents and families unless a separate funding agreement is entered into which can be discussed depending on the facts of an individual case.
If you wish to access this service, please contact CDSSG initially via admin@cdssgroup.org.uk.
The Down Syndrome Medical Interest Group have released this statement regarding Covid-19 and Down’s syndrome. Please see below for more health resources to help at this time.
People with DS do not have any medical conditions which are unique to Down’s syndrome. Any condition a person with Down’s syndrome may have is also seen in the general population. There are some conditions which people with Down’s syndrome may be more likely to experience.
Access to good healthcare and the right information is incredibly important both for prospective parents and people with Down’s syndrome. CDSSG is very fortunate to have close links with many health professionals, one of whom has devised a Top Tips for Professionals who work with people with Down’s syndrome.
CDSSG offer information, training and advice to families and health professionals to support the healthcare of people with Down’s syndrome. To find out more use the bars on the right or contact us admin@cdssgroup.org.uk.
Resources regarding the health of your child during to the COVID-19 pandemic.
RCPCH advice for parents during coronavirus
NHS advice for frontline staff treating patients with a learning disability during coronavirus
Council for Disabled Children COVID-19 advice
Include Me Too COVID-19 resources
Contact advice for people with health needs
Further recommended resources include:
DSA publications for GPs DSA health book for people with DS to use
East Cheshire NHS Trust photo journeys for typical medical appointments
FAQs
What health conditions are most common in people with Down’s syndrome?
There are some conditions that are common with people who have Down’s syndrome although it is worth noting that not every person will experience them and many of these conditions also affect the general population. Heart problems, hearing and visual impairments can occur. Other common conditions can include thyroid function, immune system development, frequent coughs and colds and gastrointestinal conditions.
Will my child have heart problems because they have Down’s syndrome?
Around 50 per cent of babies with Down’s syndrome have heart problems that can be minor or more serious. Less than one in five have a serious heart problem.
What health checks will my child with Down’s syndrome receive?
There are basic minimum health checks that babies and children with Down’s syndrome should receive. All new parents are provided with an insert for their Personal Child Health Record (PCHR). The insert contains growth charts specific to children with Down’s syndrome as well as a list of any additional checks that may be beneficial.
Is my teenager with Down’s syndrome eligible for an annual health check?
Every teenager with Down’s syndrome over the age of 14 is entitled to an annual health check. This Directed Enhanced Service (DES) has been introduced for all people with learning disabilities over the age of 14. Not every practice offers the service as the GPs are required to undertake specialist training but your practice should be able to provide you with a list of local doctors who provide the service if they do not. For more information about the annual heath check and to download the booklet visit the DSA website https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/annual-health-checks/.
Do people with Down’s syndrome have neck instability?
Sudden dislocation of the neck is very rare in people with Down’s syndrome although it is probably more common than with the rest of the general population. People with Down’s syndrome have stretchier ligaments so joints may be looser and more flexible which, in rare cases, can lead to slippage of the vertebrae. Some parents express concern about activities such as trampolining, gymnastics and horse riding for their child with Down’s syndrome. In many cases there is no reason why their child cannot take part in these activities, however all sports contain an element of risk for everyone! If you are concerned about neck instability it is advisable to ask a GP, paediatrician or chartered physiotherapist to carry out a screening test which has been developed by the British Gymnastics Association.
Is it possible for someone to have Down’s Syndrome (DS) and Autism Spectrum Condition (ASC)?
Yes, a dual diagnosis of both DS and ASC is possible. Parents sometimes may find it difficult to get a dual diagnosis for their child because the combination of DS and ASC can mean that some of the common characteristics or traits may not be obvious.
Is Coeliac disease more common in people with Down’s syndrome?
People with Down’s syndrome do have a higher chance of developing autoimmune conditions, of which Coeliac disease is one. Coeliac disease causes a person to have a bad reaction to gluten which is found in wheat, rye and barley. An assessment can be carried out by your GP and the disease can be controlled with a gluten-free diet.
Can people with Down’s syndrome lead healthy and active lives?
Absolutely. From an early age, children will benefit from making healthy food choices and being encouraged to take part in physical activity. There may be some factors that people with DS have to overcome when it comes to maintaining a healthy weight such as a lower metabolic rate and hormonal conditions. If you have any concerns regarding your child’s weight, it’s worth consulting your GP or learning disability nurse.