Voices of Parents of Children with Additional Support Needs

During July, we invited a group of parents of children with additional support needs to meet and discuss the support they receive currently in East Renfrewshire and where we might focus our efforts going forward to improve support in the future. The parents who came along had sons and daughters of all ages, from pre-school age to young adults who have left secondary school.

It was a lively and wide-ranging discussion and we hope it was useful for parents to get together with other parents and share experiences, advice, ideas and contacts.

There were some things everyone seemed to agree were important:

Transparency – being open and transparent about how the system works, what support is available and how to get it.

Fairness – people want to be treated fairly and equally, regardless of individual circumstances.

Consistent, accurate, accessible information – being able to get access to information when you needed it, all in one place, would make life a lot easier.

Choice and control – being able to make informed decisions about what would be most helpful for you. Having choice and control over support arrangements.

Appropriate support at transitions and beyond your child’s time at school.

We talked through parents’ experiences at dierent stages, from their child’s birth, when they first had concerns about their child, diagnosis, pre-school, primary school, secondary school and transition from school.

Everyone talked about their own experiences and their concerns for what was best for their sons and daughters. When we asked what support was available for parents at each stage, everyone chorused, “None!”

So, where might we focus attention to make the most difference and make parents of children with additional needs feel better supported?

We walked along the path of a child growing-up to identify the points where support for families could be improved. We’ve captured the essence of what people said along the way to illustrate the themes.

Download the PDF to find out more.

Alzheimer Scotland: Carer Friendly Community Showcase


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The Care Collective had a chat with Joanne Grant, one of the Dementia Link Workers from Alzheimer Scotland to find out how their service is supporting local carers. 

Can you tell me a bit about Alzheimer Scotland, and how you play your part in supporting local carers? 

When someone is diagnosed with Dementia, they are put in touch with our team. For one year, one of our two post diagnostic link workers will work closely with the family to help them adjust to living with Dementia, and plan for the future. As link workers we mostly work with people who are not on medication for their Dementia as those on medication will have a CPN (community psychiatric nurse) who provides support. 

By the end of the year, people are hopefully more confident and aware of what’s out there and where they can go for support if and when they need it. 

Sometimes it’s the carer who needs more of the support and we don’t actually have much contact with the person with Dementia. A big thing is just trying to support the family or partnership to get the balance right, with the carer not taking on everything. Sometimes people just need a bit of reassurance and validation that it’s ok not to be with them all the time and do your own things. You need that. You need to do your own thing. 

We’ll often be speaking to carers about their loved one’s diagnosis. We are just on the end of the phone. People call up to ask all sorts of things. What will I do if this happens, how do I communicate about that. We offer people tips and practical strategies. 

Can you give us a bit of an example? 

Sometimes it’s just really basic things. For example, a person with Dementia might frequently ask what day it is or what time it is. This can be frustrating for everyone involved, so we might suggest that they get a special Dementia clock. They are great and allow you to have the time, date, year in a very visible place. Initially it takes a bit of getting used to, but it can work for some people. 

Richard, our Dementia Advisor takes phone calls from anyone with a question, and is out and about all over the community. He runs various groups, Dementia cafes and education sessions. Through these activities we help people who are living with Dementia to support one another. We now even have a pet café where people can bring their dogs along. The next one is in August. 

What kind of difference do you think this makes to people? 

When it works well and you can help a family improve their communication

It makes a big difference to get that joint understanding at an early stage. As an outside person who isn’t part of the family, it can be easier to bring up things that might be difficult to talk about and allow everyone to acknowledge that they have different needs. If there is that understanding from that early stage, the family can hopefully move forward in confidence that they have spoken about things and know what each other want and need

Would you like to highlight another person, service or organisation in East Ren that makes east Ren more Carer friendly? 

There are lots of good Dementia resources. There is the day centre at The Stables and lunch clubs at local churches. I was just hearing from someone last week that the person who runs the Mearns Kirk Lunch Club is great. His Mum has can’t always communicate very well but they always keep him in the loop with how she has been, and what they’ve done that day. They’ve even been taking photos of her while she is at the club, and sharing them with her son. 

I do think the carers centre are good for Dementia carers. They have info sessions and group sessions and carers education sessions that are always well attended. 

Is there anything that you would like to see more of? 

In general there is much less out there for younger people with Dementia and their carers. Quite a number of people diagnosed are under 65, but at the moment a lot of services are aimed at older people. People who are under 65 might still be working, have younger family, and are generally juggling different things. 

What are the little things that you think people could do to be more ‘carer friendly’? 

I think that to recognise what people do and really acknowledge what people who are caring give to individuals and communities . They might not think of things as caring because it can be all too accepted that that’s just what you would do. But it’s not just what anyone would do. 

You can get in touch with Richard, our local Dementia Advisor by calling
0141 410 5327 

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Neighbourhood Networks: Carer Friendly Community Showcase



The second in our community showcase series shines a light on Neighbourhood Networks. We caught up with Lauren May to find out more

Can you tell me a bit about Neighbourhood Networks, and how you play your part in supporting local carers?

We’ve been facilitating peer support networks in East Ren for people who are isolated in their community for 3 years. We support people who have a mild learning disability, poor mental health or physical disability. We want to help people to have an active life, get out the house, and try new things. We want people in the network to build friendships, support each other and be as independent as possible. The network members are supported by a community living worker who lives locally. Their job is to connect people to the community and provide support for people to share and develop their skills.


What kind of difference do you think this makes to people?

The network is really flexible, the Community living works flexibly over the week and people can access support when they need it and not when they don’t. We don’t want to tell people how to live their lives, we want to help people to do what’s important for them and have opportunities and new experiences.


Do you have anything happening soon?

We’re having a neighbourhood natter in Giffnock Library on Thursdays 4:00-6:00. It’s open to anyone. You don’t have to be a member. It’s laid back, so just come along. We have both adults and kids who come along. 


It’s a good way to get out and meet new people. Some people like to bring along their arts and crafts– some members bring along jewellery making, card making, adult colouring books, games etc. We find that when people are doing something creative that they enjoy they feel more relaxed and the conversation flows.  

I think it’s good to have a space in the community and somewhere to go if you want chat, having the support of your peers can be a big help. 


Are you looking to grow the network?

We are starting to work with young people who are leaving school, college. It could be a good thing for young carers.

At the moment, we are working in the Eastern side of the local authority, but open to hearing from people on the other side too who might benefit from a network. 

We are always looking for people to approach us with any kind of skills or ideas to get something started in the community. We also have a lot of connections.


Would you like to highlight another person, service or organisation in East Ren that makes east Ren more Carer friendly?

We’ve used the Giffnock United Reform church. They are really welcoming and accommodating. The library is a really good resource too.

We are quite involved with East Renfrewshire Disability Alliance (ERDA) and think it is important to promote this to the members we support. People might not realise they do some great work. They are always looking for new members. Anyone is welcome to join if they are interested in improving the lives of disabled people and their families the area.


What are the little things that you think people could do to be more ‘carer friendly’?

Take more notice of people round about you. Often, we are caught up in our own lives and the challenges and pressures of modern life. Take some time out and make time for yourself even if it’s 10minutes.


How to get in touch

If you are interested in becoming a member of the network, or would like to recommend someone, please get in touch. We’ll come out and have a chat about what the network can offer you. 


Call Lauren on 0141 440 1005 or email her at