We love hearing from young people doing great things. Rachel Murray, 21, who has Down’s Syndrome (DS), secured her first paid role last year and we wanted to hear how she’s getting on. Rachel’s mum is a dedicated campaigner – she’s determined to educate as many people as possible about DS. Today, she’s busy in London with other families campaigning to get the Down’s Syndrome Bill passed. We talk misconceptions, local authorities and not giving up. 

Learning new skills 

Rachel landed her first paid role as a Food Service Assistant at Cramond Residence, a care home in Edinburgh, after demonstrating her hard work and talent in a variety of volunteer roles in cafés and the former Royal Hospital for Sick Children. The team at Cramond Residence were so impressed by Rachel’s application they created a tailored Food Services Assistant role, just for her. 

Now fully settled into the job, Rachel plays an integral part in the day to day running of the care home – supporting the home’s four chefs to create bespoke dishes, doing the daily tea and coffee run, taking breakfast orders and baking sweet treats for residents. 

Rachel is full of smiles, and I can see why. ‘In my role, I get to do so many different things like deliver breakfasts, bake cakes, help with food prep and make cheeseboards and platters for the residents. 

‘My favourite thing is definitely the baking. I love to make lemon drizzle cake, cheese scones and apple crumble. Since starting in June 2021, I’ve learned a lot of new skills thanks to the team who have been showing me the ropes. It’s a really friendly environment and my colleagues are great. 

‘My advice for other young people with DS is to make sure you have a great CV! – It helps people know what you can and can’t do.’ 

Since starting, Rachel has passed her Level 2 Food Hygiene Course, Rachel is going through her basic level dementia training and has learned a variety of kitchen skills under the watchful eye of head chef, Patsy.  

Valued member of the team 

Christian Daraio, Client Liaison Manager at Cramond Residence, said, ‘Rachel is a total asset to the Cramond Residence team. Her positive attitude really brightens everyone’s day. 

‘I know Head Chef Patsy in particular is very appreciative of her and she’s a great help to the rest of our food service assistants too. Because of her past experience volunteering at Sick Kids and Broomhouse café, Rachel is versatile and can work in the kitchen or on the floors, taking orders and doing the tea and coffee runs.’ 

A packed schedule  

Outside of work, Rachel loves drama, socialising with her family and friends at the weekends and watching football. Rachel is also a first aider for a church football team – managed by her dad, Brian Murray – and helps with physio and first aid. 

‘I love football! My dad’s team had a cup final this weekend and they are going to raise money for a fundraising campaign – to end discrimination for DS. I also attend a mix abilities drama group and do two shows a year, Christmas and Summer. It’s an inclusive group. I’ve met a lot of people! I have lots of friends from drama.’  

‘In 2020, I did the Kiltwalk in Scotland and helped to fundraised for ENABLE. We did lots of videos, too – it was very windy!’ 

Campaigning for change 

Rachel is visiting Parliament today with other families and her mum, Lynn. MFON asked Lynn how other parents can get involved and how much progress has been made to date. 

‘Last year, I was part of the group called the National Down’s Syndrome policy group. The idea for that, was to support a new cross-party group at Parliament. We got the chance to support a Bill – one of the MPs decided to bring in a private members Bill called the Down’s Syndrome Bill – aimed to improve the lives of people with DS. People with DS are now outliving their parents and that didn’t happen before. So, we need to make sure people with DS are supported – if they are diagnosed with dementia later in life, we need to make sure people with DS are living with people of an appropriate age.’ The policy group, Positive about Down’s Syndrome, aims to educate and raise positive awareness. The group shares videos and people can read real-life stories about DS. 

Progress so far 

‘The group has been working really hard over the past year – we hoped the Bill would have passed by now, but it hasn’t yet. It has gone through The House of Commons. Today (Monday 21st) we have invited all of the politicians to come along and there are lots of families going along today. We are also having an afternoon tea celebration with lots of photographs. Liam Fox is backing the Bill – there has been great support so far and debates in Parliament. MPs such as Gillian Keegan, who has a nephew with the condition, has shown her support. There are a few MPs who have lived experience and want change to happen. 

‘I would say that the drive for change has picked up in recent years. I’m a stakeholder in a Scottish NHS Group and I have contributed to the prenatal screening booklet. I think the booklet has benefited from my lived experience input. A lot of women are offered screening for a DS test, but a lot of women don’t know what downs syndrome is. People need to know more about the condition before they are asked whether or not to do a test.’  

Downs Syndrome misconception   

‘I think an old-fashioned perception of DS still exists. Years ago, people were institutionalised, and they died young. I think people understand the medical reference, but they don’t understand the social side of DS and that we value people with DS in the same way as everyone else.’ 

Advice for parents/carers 

‘I’m involved in some campaigning work around breaking that misconception – not seeing people with DS as if you are reading about a condition – that’s not usually how you would introduce someone. There is also the National Downs Syndrome Policy Group, which aims to educate and raise positive awareness. The group shares videos and people can read real-life stories about DS. Parents/carers should also explore Downs Syndrome Scotland and Downs Syndrome Association. Social media has been such a vital support during lockdown – how did we ever manage without zoom?!  

‘Young people with DS are a tiny group – in Edinburgh, Rachel has a few friends with DS and can meet in person as well as online. However, that’s not always the case, and people are isolated, so being able to connect online is so important.’  

Local authority support 

‘There are challenges along the way – again, there is often the idea that some people don’t understand the needs of people with DS. It can be up to the time of going to school. Young people with DS can benefit from speech therapy right up to adulthood. We have this challenge for local authorities to provide regular input – we need expert focus to help individuals with the problems they have.  

‘Everyone has a right to go to their local school. We sometimes hear that ‘the child doesn’t fit the school’ or ‘the school doesn’t fit’. I think there is a fear. Parents should try and find someone to support them and act on their behalf. The school can then feel confident that they will get some training and they will be supported. A lot of it is about understanding. It’s good for everyone to be supported and that’s on the staff side as well.  

‘We still need more support and more awareness of what’s needed. As a parent, you need to think that what’s invested now, will lead to benefits in the future. It’s good to stand your ground, for example, engaging with speech therapy now can help in the future. In a special school, you might not be happy with what’s going on. If it’s around an educational need or speech therapy – it’s important for us to speak up. 

‘People look at you and see that you are emotionally invested but when you have a third party involved to help, you can talk on a level playing field. 

‘Rachel had a good time at school, we had a wonderful Head of Learning Support, and he was Rachel’s man! We have been fortunate along the way.  

‘Don’t give up – I know it’s hard sometimes and people have a lot going on. I know some parents /carers give up but keep going.’