Gender and Data
 
The Empowering Women Panel understands that if women aren’t represented through quantitative data, and if their perspectives are not heard through qualitative research, then things won’t change. Policy will go on being made in a way that disregards gender differences and the many ways women and non-binary people are disadvantaged.
 
Our peer research project represents an excellent way of reaching out and collecting data from women who rarely have any influence on politics. By interviewing friends, family, colleagues, and people in our communities, we were able to connect with women who might not feel comfortable speaking to a professional researcher.
 
We also explored some of the barriers women encounter when trying to access aid - including the multiple hurdles faced by prepayment meter users attempting to employ the government's Energy Bills Support Scheme - therefore restricting relief for those who needed it most. Statistics will tell us a quarter of households did not use the scheme but cannot tell us why.
 
The Scottish Government should respect data that comes from more creative, innovative research methods, especially when they enable a wider range of people to participate.
 
Statistics are important, but they will never tell the whole story. Diverse and varied testimony from those with lived experience is also needed to help policy-makers really connect with and understand the challenges women and non-binary people face.
 

Background
During our second year of work, we led three ‘learning conversations’ with an Integrated Joint Board, care organisations, and advocacy groups to understand the realities of this work.

Instead of formal meetings, these were opportunities for everyone to learn from each other. Everyone was invited to share their experience of care, either personally or professionally. We also encouraged everyone to think about what got in the way of them doing the work they were trying to do, as well as what helped them.
We were encouraged by the way that everyone really listened to each other and tried to understand the realities of their experience of care. 
 
Integrated Joint Board
We spoke to members of a rural Integration Joint Board. Empowering Women Panel members from that region shared their lived experience and heard about the realities of trying to lead adult health and social care outside the Central Belt.

They described the system as being ‘on fire’ but recognised that because of the busy-ness and bureaucracy within the system, they often don’t act until the fire is ‘licking at their feet’, which feels too late. They talked about how they’re the ones designing the system yet can’t even get it right for people they love and care about. So they understand how challenging it must be for people like us who don’t fully understand or work in the system. They told us about the emphasis on targets - like delayed discharge and budgets – and how they are unable to focus on issues like early intervention and supporting people in the community, never mind equality and diversity.

They also said that there are constant demands from Government to produce more and more plans and strategies, with fewer resources available to actually put them in place. They talked about the time taken up in reporting and attending scrutiny meetings and called for more support and less pressure from Government, as well as time to implement changes before demanding even more. 

The IJB members also suggested that equality outcomes should be aligned with and integrated more strongly into the cycle of producing things like the health and social care commissioning plans, local outcomes improvement plans, and so on, rather than sitting alone.

Although they could see the value of equality impact assessments, both Scottish Government officials and IJB members recognised that they are still often carried out too late in the process. They become a ‘box ticking exercise’ rather than a tool to truly address inequalities. They also told us that the single strand approach of considering impacts for protected characteristic groups does not allow them to recognise where people may be intersectionally marginalised.

Finally, they told us that meaningful involvement of people with lived experience would, in particular, strengthen the process of undertaking equality impact assessments.

However, they did admit that the public sector often struggles to let go of their control to people and communities. They said it would be useful for them to have more guidance on this from Government, so that they feel they have permission to do this.
 
Delivery Organisations
We spoke to several commissioned services delivering adult social care who told us that they had never heard of the Public Sector Equality Duty (PSED) and are not monitored by public sector commissioners around issues relating to equality and diversity. 

The PSED is a legal requirement for public sector organisations  in the UK to think about how their policies and decisions might affect people who share a protected characteristic, such as age, disability, gender reassignment, pregnancy and maternity, race, religion or belief, sex, or sexual orientation. The idea is that that public bodies eliminate discrimination so that everyone receives the same service from them, regardless of their identities.

Delivery organisations felt that they have very little time and receive very little support around equality and diversity, despite inequalities, prejudice and discrimination being a significant issue for both service users and staff.  This was echoed by women who shared their stories with us. They told us that a ‘cost over quality’ approach to commissioning meant that some services struggle to provide humane, never mind equality-informed services.

Delivery organisations also felt a lack of trust from the public sector and that they weren’t valued. They experienced a lack of information sharing and a lack of clarity, as well as being viewed as less capable than NHS colleagues, despite doing pretty much the same work. Communication in general was seen as an issue.

They called for more support and communication and clarity from Scottish Government about how social care would be supported and valued in the future, for example, through the national care strategy.
 
Support Organisations
We heard from organisations supporting carers and protected characteristic groups that the language within the current Equality Act and Public Sector Equality Duty is not strong enough and is open to - sometimes deliberate - misinterpretation.  For example, public bodies may decide what adjustments are ‘reasonable’ for a disabled service user or staff member. But these may not be ‘reasonable’ for that person and often will not contribute towards advancing their equality.  They said that they often hear about public bodies breaking the law in terms of their equality duties, without consequences. They called for more accountability for public sector organisations that are not meeting the Duty.

These third sector organisations talked about how important their role is in connecting with marginalised people and enabling lived experience voices to be heard. They’re often not adequately resourced to do this. We know from our conversations with our peers and each other how much support third sector organisations can give and how much trust has been built.
 
Reflections
From all of our conversations with a range of professionals, we generally found that people were committed, passionate and willing. However, we found that each part of the system is working in isolation and not having useful conversations with each other. Instead, there is a lot of finger pointing and blame which ultimately doesn’t help any of them. And it certainly doesn’t help women and girls like us who are experiencing the gaps that are created by that siloed way of thinking.
 
It seems like people want to work more closely together but there’s almost so much emphasis on feeding the machine that they can’t get to the actual work. We found that the higher up the chain you go, the more people are focused on bureaucracy and less on the people with lived experience who, after all, are the real reason for this work. Lived experience is central to finding the solutions but people often struggle to know how to do that meaningfully. 
​
We learned that everyone is facing barriers. We also know that there is a willingness to find solutions.
The question is, how does the Scottish Government use the powers it does have to make sure that every part of the system can work together effectively and transform that willingness into action?
 

Leaving a Legacy
In the run up to the Accountability Event in February 2024, we thought about what we wanted Scottish Government officials to take away from the day. We were keen that it wasn’t just a ‘nice day out’, a break from sitting in front of a computer or back-to-back meetings.

Many of us shared personal stories about how the cost-of-living crisis had affected us and our families. It was important to us that the officials in the room didn’t forget what we had told them. We wanted them to think about how they could use what they had heard back at the office.
​
One way we tried this was to ask the attendees to make a pledge. This could be a personal pledge – “I will…” or a group pledge – “We will…” We provided a template with our branding in delegate packs.

The Response
After the event, we sent a follow-up email to ask attendees for photos of their completed pledges.  
We had seven responses. They were a mix of personal and departmental pledges and we were heartened by the willingness to make a difference using what had been learned:

• That our housing policy teams and analysts will work together to review available data and insights on gender intersectionality and draw out implications for our housing policy and programmes.
• To better include the voices of marginalised women and girls within our engagement and co-design work of the School Age Childcare Programme.
• To actively participate in the Scottish Government Leadership Equalities Group and ensure that our work is grounded not just in sound policy but also in lived experience of delivery too.
• To share stories to influence faster, bolder, positive change to tackle systemic intersectional inequality in every community across Scotland.

The Follow-Up
A few months later, we got in touch with them again to ask what difference making the pledge had made. Six people responded to us.

Overall, it was a positive experience from the individuals and teams who did this. They said that it helped them think about how to use what they’d heard at the Accountability Event in their day-to-day work and to stay personally involved in the work. The act of making a pledge also helped keep them accountable.

“The pledge process is a good way to challenge senior leadership to think about how we can best ensure women and girls’ considerations are embedded across policy. This public commitment is also helpful in setting the strategic direction, expectation and creating an environment that encourages the exploration of new ideas.”

They reported that progress had been made within their work. It was good for the Panel to hear this that people were working behind the scenes because we usually can’t see the difference our work has made.

Officials said that they were thinking about intersectionality more and about how to include the experiences of marginalised women in the work that they do. And they were including gender and intersectionality in their analysis of policy. This all helped them talk to colleagues about doing the same. They felt that it gave them a broader understanding of barriers experienced by marginalised women better and it encouraged them to work in partnership with colleagues in different areas of government and in different public bodies to make change.

When we asked them about what had got in the way of their progress, they talked about the lack of understanding about intersectionality across policy areas and a lack of a shared definition. They were also aware of some gaps in evidence. Other barriers included competing priorities and crises within government, lack of continuity in leadership and a general lack of resources. They were also aware of the limited capacity of the Empowering Women Panel to do work outside the scope of the existing project.

We asked for examples of what had helped make progress and suggestions for what might help in future.

Engaging with people with lived experience, along with guidance on how to use this in developing policy was mentioned. The importance of working with the organisations that already have trusted relationships with the individuals was also highlighted.

Officials also wanted the opportunity to build their knowledge of intersectionality and, again, sought guidance on how to translate this into building policy.

Partnership working with other areas of government, for example, analytical colleagues had worked well for some and there was an appetite for more of this approach.

It was suggested that strong leadership making it clear that an intersectional approach was a priority was vital.
We asked those who had returned a pledge to tell us what would happen next. It was heartening to hear that people were already considering this.

There was a willingness to work more in partnership, whether that was with other Scottish Government colleagues or other organisations, such as local authorities. They wanted to explore more opportunities to use lived experience to develop policy.

They wanted to build their knowledge of marginalised groups and the barriers they face and to think of other ways of gathering relevant information and evidence, such as seeking out existing data. There was also an acknowledgement of the importance of Equality Impact Assessments earlier in the policy development process.
 
Our Learning
We were disappointed that we didn’t receive more pledges from a conference room full of officials. However, we understand that people were returning to a busy inbox after a day away from their desks.

So, it means we have to think differently about how we cement learning and influence change in the future. At this year’s Accountability event, we reminded officials that we are more than just lived experience stories and reported on the learning conversations we had had with policy makers, delivery organisations and support organisations. We asked them remember that policy work is ultimately about making a difference to people and to keep focused on solutions and supporting colleagues to do the same.

We have a unique part of the jigsaw to help policy makers think about who will be most impacted by the decisions they make. Embedding lived experience into the process will help make policy better for women and girls across Scotland, which can only be a win for everyone involved.

We pledge to keep sharing our stories and expecting change. What about you?

The Empowering Women Panel (EWP) was set up in March 2023. In Spring 2024, at the end of the first year, Sleeping Giants carried out an evaluation to learn what had worked well and what could be improved for the next year. This was completed with the help of an independent researcher.

What We Wanted to Achieve
At the start of the project, Sleeping Giants and the Scottish Government agreed Panel members should have a positive experience. Both groups also wanted to make sure they were able to take part in activities and share their views in ways that worked for each individual.   

Sleeping Giants and the Scottish Government also agreed three project outcomes. An outcome is just a different way of identifying what differences were made. These were:

1. Panel members have improved opportunities for accessible and positive participation.
This means individual Panel members have all the information and support they need to share their views, work with others and make decisions for themselves.
You can read more about the Panel’s views on participation in a previous blog here.

2. Panel members have increased capacity.
This means that Panel members have more knowledge and confidence, can take part fully in Panel work, and have their voices heard, so that they could help influence Scottish Government decisions.

3. The National Advisory Council on Women and Girls (NACWG) are better able to provide advice and challenge to the First Minister because of the learning from - and partnership - with the Panel.
 
What We Did in Our First Year
The first year of the project has been very busy for everyone. Here are some of the activities that have taken place:

What Went Well
Members of the Empowering Women Panel were asked about their experience of being part of the Panel. This is what they said:

• 93% felt the Panel reflected their own concerns and goals
• 100% enjoyed being part of the Panel
• 100% felt that they were able to take part in a way that suited them

One Panel member said:
“I can’t think of a single thing I would change. The experience so far has been so interesting and has really made me think about the issues and struggles other people face. love the training the meet ups r great love it all🫶🏻🫶🏻🫶🏻”
 
We also gathered information about whether the three project outcomes were achieved and what other differences the group. 

Outcome 1: Panel members have improved opportunities for accessible and positive participation.
At the end of Year One, Panel members felt they had more information and felt more involved than at the start. 

One Panel member said: “I’ve always felt supported, I’ve always felt that my voice has been heard even when I haven’t been about to attend meetings. I’ve still received all the information, emails, all the notes on everything. Everything that I could ever have wanted has been there and more…”

But there was still room for more meaningful participation to take place. The Panel wanted to spend more time with the (NACWG) so they could get to know the council better and strengthen their relationship, balancing the scales of power.
 
Outcome 2: Panel members have increased capacity.
Panel members said that they felt more knowledgeable and had more confidence after a year on the Panel.

One Panel member said: “It’s been wonderful because I’ve got to meet such a diversity of different women and learned about so many different opinions and things that I had never been open to before…”

But the group felt their ability to influence decisions did not change, so this outcome has only been partially achieved and will be something the Panel members work on more in Year Two.
 
Outcome 3: NACWG are better able to provide advice and challenge to the First Minister because of the learning from and partnership with the Panel.

Most NACWG members thought that the Advisory Council and Empowering Women Panel were able to share knowledge and understanding with other. They also thought that, by working together, everyone is able to do their jobs better and therefore make more of a difference.
 
What Could Go Better
Most comments and feedback from the Empowering Women Panel were positive but there is always room for improvement. Here are some of the suggestions they made for making Year Two even better.

1. Learning more about complicated topics, like intersectionality.

• NACWG members will come to our training sessions to help us do this.

2. Making sure younger Panel members have a stronger voice.

• ​We have a new mentor from the Young Women’s Movement who will support young Panel members.

 
3. Helping Panel members with a learning disability to better participate.

• We have a new mentor from People First Scotland who will support members with a learning disability.

 
4. Setting up a buddy system.

• We are setting up an informal system to ensure members of the Panel and NACWG get to know each other better, and that Panel members can support each other more easily.

 
5. Creating space for more discussion of the issues that really matter to members.

• We will have the chance to talk about some of these issues during our work in the second year, including care and childcare.

 
6. Continuing to build the relationship between the National Advisory Council and Panel members.

• We are creating more joint sessions to help build stronger relationships.

 
7. The accessibility of policy discussions.

• We will continue to remind the NACWG and Scottish Government officials that jargon and needlessly complicated language is unhelpful.

 
8. Review the approach to evaluation and monitoring

• Sleeping Giants will ensure that how they ask about progress is as simple and straightforward as possible.

 
9. Identify if and how the Panel is making a difference to decision-making

• It is hard to know for certain how the work of the Panel is influencing decision-making. We will work with the NACWG to find ways to show how lived experience is making a difference.

 

Members of the Panel shared lots of lovely quotes with us when we asked about their experience of being involved. Here are just a couple.

“I’ve really enjoyed being on the panel, it’s been a great experience for me.” 

“It’s wonderful that you’ve got a group of women that are willing to share their lived experience because I feel that is so much more powerful because you’re talking from a place of genuine knowledge and nobody is an expert in your life…”

“I have realised that I have more to say than I thought I did.”
 
If you would like to read the executive summary of the Empowering Women Panel Year One evaluation, you can find it here.

If you would like to view a 12-minute video about our work in Year One, you can find it here.

The Importance of Accountability
 
Accountability is a top priority for members of the Empowering Women Panel; we are keen to see how decision makers are taking responsibility for ensuring visible differences are made to the lives of women, girls, and non-binary people in Scotland. A starting point was discussing what accountability means to us in the context of the Scottish Government.    
 
Our understanding of accountability is guaranteeing that people do what they say they’re going to do. Which, in terms of our work on the panel, involves asking questions of the Scottish Government and civil servants about how they are progressing gender equality across Scotland.
 
We’re also interested in the question of who holds other organisations and public bodies to account - like knowing funding is being spent properly and that gender equality is taken into consideration. While we watch as services diminish and waiting lists increase, what does the public actually see in return for the money that is being spent and are women and girls’ lives reflected in decision-making?
 
The Accountability Process
 
The Empowering Women Panel has been part of an accountability process with the Scottish Government and the National Advisory Council on Women and Girls (NACWG). This has included sharing our lived experience and reporting on the impacts of current policies on our lives and those of women and girls we know.
 
We were invited to ask questions about key areas of importance to us, including intersectionality, mental health, and the value placed on care. We did not feel encouraged after reading responses to our scrutiny questions; the answers we received from civil servants were vague, written in inaccessible language, and showed no signs of change. 
 
The Accountability Event
 
In February, the group attended an Accountability Event with the National Advisory Council, then-Deputy First Minister, and civil servants from across government where we asked attendees to make a pledge about how they will personally and collectively work towards inclusion of the most marginalised women and girls.
 
Panel members were nervous beforehand – not because we are afraid of speaking truth to power, but because we didn’t know if we would be taken seriously, or if anything would happen as a result of us sharing our stories. 
 
A huge amount of work went into preparing for the event: learning to interview our peers to better understand their experiences of the cost-of-living crisis; writing and practising our stories to share during the presentation; spending time in art workshops and at home to produce creative responses; and organising childcare so we could attend these activities. Our session at the Accountability Event was the result of hours of input from panel members and peers.
 
Highlights of the day include the NACWG sharing their power with us and acknowledging our contributions, and policy makers experiencing as they related what we told them to their own work. This human-to-human interaction gave us a glimmer of hope that we have made a difference, and that future policy may reflect that.
 
However, our hope diminished slightly during the afternoon session between the NACWG and the Scottish Government, when civil servants’ inaccessible language and well-worn answers returned, and we were left wondering if there would be any lasting effect from our efforts.
 
We are eager for decision makers to take intersectionality into account when developing and implementing policy. That requires considering the layers of disadvantage facing Scotland’s most marginalised women and girls. These layers are not just about protected characteristics—age, disability, ethnicity, LGBTQIA+ identity, etc.—but also situations such as poverty, low mental health, rural isolation, and digital exclusion.
 
The panel was, however, encouraged by our April meeting with former First Minister Humza Yousaf and Deputy First Minister Shona Robison. We felt listened to and as if our concerns had been heard. We understand that change is a feature of government and hope that the new administration carries on from where the previous one left off. The panel is building momentum that must not be lost if real change is to happen.
 
The Future
 
The Empowering Women Panel is a great resource to those in power and there is a real opportunity to demonstrate that their lived experience is valued and will be learned from. We are passionate about holding the Scottish Government to account, but the process must be accessible, meaningful, and value our participation. 
 
We are looking forward to meeting the new First Minister, John Swinney, and continuing to make an impact, now and in the future.
 

​My experience
 
When people talk about the cost-of-living crisis, you initially think about prices going up in shops, fuel bills rising, people struggling and having to give up a lot of things.  And all that is true.  But for me, because of my ongoing and chronic mental health issues, I’ve been deemed unfit to hold down a job for many years.  So, I’ve had to learn to live frugally within a restricted budget and to eke things out.  That’s just my normal.
 
The biggest impact for me since the cost-of-living crisis began is that I feel more isolated now, because of how it's affected public services. Places like my local Leisure Centre that I used to go to for a bit of social interaction, have closed down now. 
 
So, since the cost-of-living crisis, I have become more reclusive. I’ve lost a feeling of connectedness with my community and even my street.  It continues to have a huge impact on my mental health, and I feel a huge sense of despair.
 
Sometimes I also don't want to leave the house because I don’t feel safe due to escalating levels of violence especially towards women.  It’s not going away. It's escalating, and it's absolutely terrifying.
 
So, when I hear on the news that crime figures have supposedly dropped, but that crimes towards women aren’t even included in these figures, I find it sickening.  It makes me feel like women like me don’t matter.  I might read pretty words in reports, but I don’t seem to ever see any changes.
 
I also struggle every day to be treated with respect and to be understood, especially because you can’t see my disability.  People always ask, “what do you do?” and because I don’t have a job, I often get ‘that look’.  It’s very stigmatizing.  I might not have a job, but I do try my best to live my life as well as I can, and I try to think of others and help them. 
 
However, organisations that are supposed to help me, often don’t, because they have inflexible systems and are not geared up to respond to women’s issues.  For instance, I’ve only just recently been diagnosed with ADHD after being wrongly diagnosed for my whole life.  Just about all the studies on ADHD have been done on men and boys so they don’t recognise it in women.  We are labelled as problematic or hysterical.
 
Similarly, there’s a reluctance to acknowledge that the root cause of my complex PTSD has been gender-based violence which just invalidates the level of violence that I’ve experienced throughout my life and still am continuing to experience.  
 
Trying to keep myself safe is a real worry when you hear about the cuts to the recruitment of police officers across the Country. You worry that if you do phone them if you have an issue, will they come out and will anything be done? 
 
And I'm always scared about getting pulled in by DWP, especially because they are saying they want half a million people up and down the country off disability benefits and into work.  I'm living in fear constantly.
 
What would help?
 
I think that what would help people like me most with the cost-of-living crisis is building up the infrastructure in our communities. Because of the poor public transport, there's communities that are cut off from one another. Social venues are closing.  Everything's on its knees. There’s very little to call a community spirit and people like me are losing hope, feeling isolated, scared, and vulnerable.  Like there’s no safety net. 
 
Although private houses are being built, these are unaffordable for ordinary folk, and they are not building any community hub to bring people together.  This kind of disconnection is dangerous.
 
We also really need spaces for intersectional women from all backgrounds that we can go to feel safe, to support each other to feel like we have self-worth and dignity. 
 
Women only spaces are important, because in my experience of going to groups, it’s often hard to find a voice, and to feel safe in mixed spaces.  Some men feel threatened and get angry when women speak out, or when they hear discussions around women holding power, having money and being seen in society as equal to men.  This leaves women like me feeling intimidated and unsafe, and like we don’t want to go back there, even though we might really need the support on offer.
 
Although the extra money that I’ve received for the cost-of-living crisis has helped, you can’t make everything better with money. 
 
For me what’s more important is a sense of having a place in society, having a place in my community, a feeling that I’m safe, I’m seen and that I matter.
 
It’s more important to know that I will be treated with respect when going to the Health Centre, that I won’t have to fight for the recognition of the issues that I have, and that I won’t be seen as a mad, bad and dangerous person, just because I have struggles with my mental health. 
 
We're all human. We're all trying to get by.  We all matter.  And if we’re going to really help women and girls like us, we should come together and connect.  Not just words, but in a way that makes real changes happen.

​Hello, my name is Deborah, and like many Sri Lankan Tamils who emigrated to different places, I was one of them.
 
I moved to the UK as a child, and Scotland became my home 24 years ago in order to live a better and safer life. I am also disabled, and I am going to share my situation and experiences due to the living cost crisis.
 
Like so many disabled people in the UK, I struggled to find a job that would accommodate my disability for almost 4 years. I need to cut back on many things, such as energy bills and other essentials, and it has affected my mental health. But I believe in my heart that this country could do so much better for intersectional women who are running away to escape their home country, gender-based violence, and many disabled women rely on life-saving equipment, such as electric wheelchairs, mobility devices, and oxygen concentrators, which are no longer possible due to financial limitations. Because if this government does not stand up for them to fight for gender equality, then who will?
 
I am afraid that the Scottish Government has not provided enough support for intersectional and disabled women, acknowledging the diversity of experiences among survivors, especially the intersectional lens, which not only addresses disparities but also promotes empowerment and inclusivity.
 
For women and girls like me, we need better sensibility, and the Scottish Government should advocate for intersectionality to form the foundation.
 

​Community groups and facilities is the glue that keeps so many communities together. To give you the direct quotes of some young people I’ve worked with:
“I don’t know where I’d be without this group”, “I feel like you guys get me, I’ve never felt that before”, “I love coming here, it gets me out the house”.

Whether it’s youth groups, community cafes, adult learning groups or sports clubs, each group has had a role to play during the cost of living crisis. During a time where many people may lack warm spaces, hot meals, company and laughter, community spaces have provided a safe, welcoming, non-judgemental and inclusive space for the most vulnerable to come along and just “be”.

Taking an example from my own work - throughout the cost of living crisis we introduced hot meals for all evening youth work provisions, ensuring all young people could access at least one hot meal a day. As a result, we seen a massive spike in numbers - it wasn’t unprecedented, we knew word was spreading and we were glad to be reaching more and more young people, however the current funding climate means we cannot spread our reach, or even sustain our current programmes.

These groups can provide a lifeline to individuals, they can be the glue holding a person or family together, but as budgets are slashed and resources are pushed to last longer and go further, it’s the people that suffer.

Over the last year - I’ve watched more and more groups, cafes and larders close due to increased costs and lack of funding. It’s not that these groups weren’t busy, weren’t reaching outcomes and weren’t making a difference - but they didn’t have the resources to back this. Even as I write this, my own job is in jeopardy as I struggle to secure more funding.

More funding, and importantly secure, sustainable funding is needed to allow community-based services to continue to deliver vital services to those most in need. I see first-hand each day the benefits on young people and families. At a time with lots of uncertainties and financial pressure, these groups are needed to respond to the needs of the community; develop resilience; build capacity and to empower communities.

My name is Leeanne, and I am a person who has a background in the Care system and has lived experience of a Learning Disability. Over the years I have made a life for myself where I have been involved and worn all different kinds of hats in different parts of my life - to help and encourage other people to get their voices heard in different parts of the world and other organisations to try and make a difference worldwide and beyond! 

I want to tell you a little bit about my experience.  

Our Human Rights are no different to other people. People with a Learning Disability in particular who are also facing a care-experienced background face more barriers than most. More than a few people who have a Learning Disability do not get our Human Rights respected. This needs to be changed by listening to us who have lived experience and what we know. Those barriers are highlighted by services that are meant to be a support system in our lives. The choices, for example, to have a family in the future is another set of hoops to jump through and more.

When I was younger my birth family treated me as an outsider and did not want to see me as part of their family. I always thought I was on my own with this but through the years I came to realise that there are more people that I have met in different places such as people in organisations and friends that I have come to know over the years working alongside them. I tend always to say you never know who has been through the same thing as you until you speak up.

I would like to see the Scottish Government leading the way to educate those needing advice from someone who has firsthand experience of a very challenging childhood. The Scottish Government must work closely with those who have lived experience to do this the right way. 

What we need to say is very important, educational, and inspiring to other people!

I have written a book that combines my lived experience in one giant puzzle. The book is called ‘My Journey Through Life – The Real Me!’  I am also writing my second book which will reference a lot of important learning and lessons to be learned. Yes, the two books will highlight a lot of things. But the important message is that everyone is unique and important, and you need to understand that everyone is different. 

Today I would like to ask one vastly important question. To me, it is very important in today’s society: What do you think you would do to support people with a Learning Disability and care-experienced background to communicate better? For example, I would say communication is first and foremost and that people need to communicate with us to ensure that we get the right help from the right people and services. 

In my time as a trainer, I have always looked at my Learning Disability differently from others or I have questioned myself. Most of the time people have often told me when I was younger that I do have a Learning Disability but to be honest with you I do not see me having a Learning Disability.

I see someone who learns differently and who has a mild difficulty. Being part of the Learning Disability, Autism and Neurodivergence LDAN Bill as one of the Leap members who help and advise the Scottish Government has made me question whether or not I have a Learning Disability. 

While on the Learning Disability, Autism and Neurodivergence LDAN Bill I was allocated by organisations that I have been working with over the years to be on a panel of people with Learning Disabilities to advise what was best for us to the Scottish Government. We worked very hard for over a year and still are to ensure that the voices are heard for people with Learning Disabilities in this bill. 

People with Learning Disabilities must be at the front of the bill instead of the back pages. There was a time during the process when we thought we were losing our voices. It is still a great opportunity for those who were on the Leap panel. People with learning disabilities attended over 56 meetings to ensure that people with Learning Disabilities are more than just heard in any part of the bill and their lives. 

Most people who enter the care system have several issues that are very important and unique. Most of these people do not have a voice or it is hard for them to stand up for themselves. The people with a voice do try their best to stand up for other people and not just themselves. 
 

​Jenny is a working age unpaid carer, living in a rural area. This is her story. 

My wife suffers from severe mental health issues, has attempted suicide on several occasions and cannot be left alone. 

I care full time for my disabled wife, providing full-time personal care, emotional support, finance management, shopping, mobility assistance and help with medication and transportation to and from medical appointments. 

Most unpaid carers are women and the cost of-living-crisis is having a more harmful effect on them due to the persistent inequalities in pay.  

The cost-of-living crisis has meant that household energy costs and transportation costs have risen dramatically. We consume more energy as we are at home most of the time and we live in a rural area where longer journeys are necessary to access services. This means that our household finances are pushed to the limit. 

No particular thought seems to have been given to unpaid carers’ vulnerability to the rising household energy and transportation costs. 

I do not receive any means tested social security payments and thus did not receive any of the £900 payment to help out with rising energy costs, and carer’s allowance was not a qualifying benefit for any additional support in response to the cost-of-living crisis.  

Because of my restricted ability to work - due to my care commitments – I do not have the flexibility to get a job or increase work hours to offset rising costs. In addition, the social security net, on which we rely, has not kept up with inflation in previous years. This means that that even before the start of the cost-of-living crisis, our finances were stretched to say the least.  

The constant money worries and anxiety have resulted in deteriorating mental health, isolation and exhaustion at a time when previously helpful support services are being scaled down or closed.