If you care for a child with a rare condition, come along to our free online event on 11 November!
Our Rare Voices Together online conference is a rare opportunity for you to meet and share experiences with other parent carers and to hear rare condition support groups and other experts in rare conditions.
Martina Rodie from the Office for Rare Conditions in Glasgow. Martina will talk about the work they do providing information and support to individuals and families affected by rare and undiagnosed conditions and how they empower them by supporting their ability to take an active role in their health and well-being.
Joanna Holmes who is a full-time parent carer for her daughter who has Emanuel Syndrome and a trainer and Partnership Development Officer for support group, Born at the Right Time.
Pete Richardson managing director at support group, Fragile X Society. Fragile X is a genetic condition, affecting around 1 in 4000 males and 1 in 6000 females. It is the most common inherited cause of learning disability.
Natalie Frankish from the Genetic Alliance. Genetic Alliance is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK.
Attendees will also have the opportunity to hear from Contact’s campaigns team and find out more about our Change Makers – a community of parent carers banding together to get their voices heard and make a difference.
Contact’s work supporting rare families
Contact has always worked with families with rare conditions, bringing them together, providing advice and support, and highlighting the unique challenges they face.
Visit our rare conditions page for information on getting support for your child and your family.
Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.
Contact’s Rare Conditions Network
Thanks to funding from Pears Foundation, we created the Rare Conditions Network and resources to support the charities who are part of our Rare Group Network. Our Rare Conditions Network toolkit includes advice on managing volunteers, guidance on using social media, and our group action pack.
Thanks to everyone who has been involved in our brand refresh project so far including taking part in focus groups, workshops and surveys. One of the things we are now exploring is a new charity name.
Research we carried out with parent carers and other supporters told us that 70% think it’s time for a name change.
So with your help we’ve got a short list of 3 names plus our current name, and we’d love you to help us make the right choice.
Please take a few minutes to complete our short survey. We’re asking for your thoughts on the name only – you’ll see a sample strapline alongside each name just to show how it could look (the final wording of the strapline will be decided later).
From information fairs and conferences to carer events, there’s plenty happening across Scotland this autumn for families with disabled and additional needs children. The Contact Scotland team will be at the following events and venues over the next couple of months – stop by for a chat and a friendly welcome wherever you see our stand!
Stanmore House School Family Support and Resource Fair, Lanark
Wednesday 24 September, 9:45am – 2pm at Stanmore House School, Stanmore Road, Lanark, ML11 7RR. Free transport from Lanark train station.
This free drop-in event is open to all families with disabled or complex needs children, whether or not they attend the school.
Look out for our Contact information stand, where our team will be ready to help and share support. Joining us will be lots of other local and national organisations who can offer advice and information on a range of topics relating to disabilities and additional needs.
It’s also a great chance to have a look around Stanmore House School, which provides education for children with complex needs and accepts applications from other local authorities out of the area.
By Your Side is our hospital-based service for families of disabled or ASN children and young people up to the age of 25 (with or without a diagnosis). Whether your child is staying in hospital or you’re there for appointments, we can provide information, guidance and a listening ear. We’re also here for hospital staff too.
Come and find us in the main atrium from 10am – 2pm on the following dates:
University Hospital Wishaw on Tuesday 28 October and Tuesday 25 November.
Queen Elizabeth University Hospital, Glasgow on Tuesday 21 October, Tuesday 11 November, Tuesday 9th December.
Transitions Information Evening, West Lothian
Thursday 16 October, 6–8pm at Howden Park Centre (doors open from 5.45pm).
The Contact Scotland team will also be part of this fantastic event, bringing together different services and organisations under one roof.
The event is being organised by Carers of West Lothian for parents of young people with additional support needs (aged 14–18). From grassroots volunteer groups to formal care agencies, colleges, and social work, it’s a great way to find out about the support and services available as a young person approaches adulthood.
Parents are welcome to bring their young person along too! There is step free access as well as a quiet space for those who need it.
Cerebral Palsy Scotland Conference and Exhibition 2025
Crowne Plaza Glasgow, Wednesday 8 October.
The 12th annual Cerebral Palsy Scotland Conference and Exhibition is free to attend. Scotland’s only annual event focusing on cerebral palsy, it’s open to anyone with experience of cerebral palsy – whether directly, as a family member, or professionally – and is a great opportunity to connect, share information, and learn from others in the community.
Have you ever wished you could speak directly to those in charge about the challenges of being a carer? The Carers Parliament 2025 gives carers the opportunity to share experiences and put questions directly to national and local Government decision-makers. And best of all, you don’t need to leave your home to do it!
As we wave goodbye to the long summer break, we hope the memories of Contact’s fun activity days throughout August stick around a bit longer for all the families who attended them.
From sandy adventures in Bournemouth, Herne Bay and Southend, to a wild day at London Zoo. Every trip was packed with smiles, laughter and special moments. (Our Zoo trip was kindly organised by John Lyon’s Charity, as part of their celebration of 10 years of their SchoolHoliday Activity Fund)
Whether it was building sandcastles, paddling in the sea or making new friends, our family fun days offer families more than just a change of scenery. They create lasting connections and memories.
“I loved being friends with the ocean”
One parent summed up the spirit of these days perfectly: “Thank you to the team for a lovely day out. It is a great opportunity to meet other parents and carers and children.”
“Thank you so much for today’s trip to London Zoo. We all had a fantastic time, and the food was great. All the staff were so supportive. Thank you once again.”
Parent carer
And one young beachgoer melted our hearts with this gem: “I loved being friends with the ocean. I could not think of anything I did not like.”
“It was unforgettable”
These trips also mean a lot to Contact’s staff – especially those who work behind the scenes at Contact HQ. Here’s what our database manager, Alex, had to say after volunteering on our Bournemouth family day out:
“Volunteering at Contact’s family events is an excellent way to put myself in touch with why we do the jobs we do.
“I’ve had all kinds of illuminating conversations with parent carers. I’ve seen the real positive effect that a trip out can have on them and their (often very excited) children. It is a pleasure to support them in some small way.
“My favourite moment so far? The cheer that went up on the coach from the children as they spotted the sea for the first time on the approach to Bournemouth. Some of them had never seen a beach before – it was unforgettable.”
Could you help us unlock even more joy for families by making a donation to our summer appeal? Your donation, however big or small, will make a big difference.
As Co-production Week, 30 June – 6 July, comes to a close, we’re highlighting the work of SEND Power in Haringey, the local parent carer forum that stepped in when vital services for families of children with SEND in the borough were falling short.
SEND Power’s work shows how partnership and co-production can drive real change — and the impact that parent carers can have in shaping better futures for their children and their communities.
Before SEND Power in Haringey got involved, many families in the area felt unheard and unsupported, and the gaps in services were having a direct impact on children’s health, development, and wellbeing. The parent carer forum fed this back to the council and decided to co-create a local charter and accompanying training programme to improve the way families and local authority services work with each other.
The charter was shaped collaboratively. Parents, local authority staff and children and young people contributed to the charter’s content and design which included holding a children’s competition to design the charter’s logo which a local SEND youth forum judged. Many drafts later the Haringey Working Together Charter was launched, setting out the values that underpin good working relationships – kindness and empathy, trust, safety and belonging. Most importantly the charter stresses that families and practitioners are equal partners in shaping services that affect the entire borough, including children, young people, education, health and care.
Everything about the charter has been co-produced, from its mission and purpose to the artwork. The Charter can now be found on display in schools and other settings like the borough’s local Child Development Centre. Wider dissemination is planned through training and communications.
What difference has the Charter made?
The parent carer forum took action by gathering feedback from parent carers and presenting this lived experience to local decision-makers. Through regular co-production meetings, consultations, and collaborative workshops, the forum worked closely with Haringey council to make sure families’ voices were not just heard but acted upon.
As a result of the forum’s involvement and the Charter, families report feeling more supported, and many say the improvements have reduced daily stress and improved their children’s outcomes. The Charter is popular amongst parents because it gives them a framework of what they can expect. But this didn’t happen overnight — it was the result of consistent advocacy, relationship-building, and shared commitment.
The forum credits some of its success to support from Contact’s Parent Carer Participation team who support the development of 152 parent carer forums in England. Contact’s team offered invaluable guidance and encouragement throughout the process which the Haringey forum says helped them build confidence and know how to frame our concerns effectively.
Following this work families and practitioners in Haringey are now working together to develop a co-production training package, which will be underpinned by the charter with the aim of being ready by September 2025.
Contact’s Chief Executive, Anna Bird, has today given evidence to the Health and Social Care Committee about families’ experiences of health services in the early years.
The Committee is carrying out a review of the first 1000 days of a child’s life. Today’s session examined the provision of community paediatric services, asking witnesses for their views on the challenges families face in accessing services.
There is often no support during often long waits for early years diagnosis.
Delays in assessment and diagnosis mean parents can’t get support from social care and other important services. They also lead to escalating needs with children waiting longer for specialist equipment (e.g. postural seats), wheelchairs and therapies including help with feeding and communication.
Parents end up getting into debt to pay for private assessments and therapies.
Schools often talk about children with SEND not being ‘school ready’ – for example not being toilet trained or able to follow instructions. However, delays in families accessing community paediatrics also means nurseries and schools are also ‘not ready’ to receive and support the child because they do not have a clear description of their needs or funding to support them
More and more diagnosis is happening via online platforms, like Zoom, leading to increased feelings of isolation.
Parents find it very difficult to access a paediatrician in the early years, meaning they may have multiple professionals involved but no one overseeing their child’s care.
Anna Bird said: “The families we support often have complex health needs and what they need is early access to good quality expertise and insight into their child’s condition as well as wraparound care for the whole family. But what they face are long delays for assessments, diagnosis and therapies. This leads to a child’s escalating needs and huge stress and negative impact on the family’s health and wellbeing.”
One mum told us her son waited over two years to be seen by a paediatrician and a further 3 years for him to get a diagnosis of Houge-Janssens Syndrome Type 4. They were completely unsupported during that time. Until that point, everyone assumed his delays were down to parenting rather than an underlying diagnosis. The paediatrician was reluctant to refer her son for genetic testing which meant he was not diagnosed until the age of 7. “He and we were really traumatised by the lack of support, which impacted school and our access to support.
What we would like to see:
Investment in the community paediatric workforce including paediatricians and therapists to reduce waiting times.
Increase the number of paediatricians and therapists trained in neuro disability and children’s developmental needs.
Engage charities and other parent carer-led organisations to design and provide holistic advice and support to parents on waiting lists
Contact’s Brighter Beginnings programme delivers free online and in-person workshops to parents of disabled children on toileting, sleep, communication and behaviour in the early years. Our Helping Hand service provided a 6-week programme of support for families in West London on autism waiting lists covering behaviour, communication, carer wellbeing, anxiety and supporting their child’s sensory needs. These services need to be made more widely available for families, perhaps via referrals from the neighbourhood children’s teams, for example.
Reinvigorate Portage services. Families consistently highly rate portage, but services are rare.
Ensure appointments with paediatricians are accessible for families – in person as well as online.
Develop models of healthcare and support tailored to pre-school children with SEND based in the community. Specialist centres like the Tree House Early Years Centre in Newcastle are a great example of how best to join up health, education and support services for disabled children. The Centre was co-designed with families and the local parent carer forum.
This week is Co-production Week – a time to highlight the power of working with people rather than simply doing things for them.
Co-production means bringing people with lived experience into the heart of decisions that affect them. It’s about sharing power, listening, sharing ideas, and making decisions together from the start. That’s why this Co-production Week we’re celebrating the brilliant work of the National Network of Parent Carer Forums and all the local Parent Carer Forums across England.
Over 1,000 parent carers are involved in running their forum, working tirelessly with local services – like heath, education and social care – to make sure families’ real experiences shape how support is designed and delivered.
Together, they speak up for over 150,000 parent carers.
Parent carer forums gather and share their communities’ experiences and work in solution focussed ways to create real change; That’s what co-production is all about.
Thank you to every parent carer giving your time, voice, and insight to help make things better.
We see you. We value you. We stand with you.
More about parent carer forums
Contact works with the Department for Education (DfE) to support parent carer forums across England by providing an adviser team, training and resources to forums, and helping forums manage the DfE grants they are awarded to support parent participation in their area.
We’re looking for as many parents, carers, practitioners and supporters as possible to fill in our short survey to tell us what you think about Contact and how we come across.
We want to improve the way we communicate the work we do here at Contact, so people better understand what we offer families and people who work with disabled children and their families.
What you tell us will play a vital role in this and help us shape the way we communicate with parents, carers, supporters, professionals and other audiences.
We are delighted to announce that we have been successful in securing a £45,000 a year for the next three years from John Lyon’s Charity to help Contact’s Ealing team support even more families with disabled children in the borough.
Thanks to this generous funding from John Lyon’s Charity, Contact’s Ealing team will be able to continue the vital work they do supporting families with disabled children there by offering high quality and expert one to one advice, school outreach work, parent workshops and meet ups, as well as running popular family events that bring families together and reduce isolation.
Contact has been working in the London borough of Ealing for over 40 years.
Brigitte Bistrick-Bryan, Contact’s Ealing manager says: “We’ve been lucky enough to have had the support of John Lyon’s Charity for the last three years, and we’re extremely grateful that they have agreed to fund our work for a further three years. The funding they provide makes a huge difference to Contact and the families we support. It means that parents and carers in Ealing can rely on us to be there for them when they need us with information, advice and support.
“The funding from John Lyon’s Charity couldn’t have come at a better time as families with disabled children in the borough – and across the UK – face disability benefit changes, squeezed education, health and social care support and a daily battle to get the support they are entitled to for their disabled children and their families.”
John Lyon’s Charity gives grants to benefit children and young people up to the age of 25 who live in nine boroughs in North and West London including Ealing.
Imogen has been working with other charities and organisations including Special Needs Jungle and Ipsea to come up with solutions to improve the education system for children with additional needs.
Solutions
At an evidence hearing in parliament today, she was quizzed by MPs about Contact’s call for SEN support to be put on a statutory footing. This would mean that extra help would be available to those children with suspected additional needs, without the need for an Education, Health and Care Plan (EHCP). That support could be small group sessions, access to emotional and social help or access to a speech and language therapist. The committee heard that funding for SEN support has not increased in 15 years, and could be one of the factors driving the increase in demand for EHCPs.
Action is urgent
Imogen said: “We are confident that with the right action, meaningful and sustainable change is possible for children and young people with Special Educational Needs and Disabilities (SEND). Early support is key, as well as good advice and information. Parents knowing that schools will provide a certain level of extra support for children without the need for an Education Health and Care Plan. This could all make a huge difference.
“It’s good the government is genuinely listening to help shape their plans for solving the crisis. But action is urgent. We hear on our helpline everyday of children and families being let down.”
Imogen added: “There should be consequences for local authorities which are routinely not complying with the law.”
She also spoke about the importance of home to school transport for many families and our campaign to close the loophole which means many 16 year olds suddenly lose their transport entitlement despite the law saying that they need to be in school or college until the age of 18.
We have submitted written evidence to the Education select committee, which will now speak to local authorities and schools as part of the next stage of their inquiry.
We wanted to say Happy New Year to all our families and to thank you for being an essential part of what we achieved throughout 2024.
We had the privilege of supporting over 400,000 families across the UK last year, offering advice and information that helped transform lives.
Our Family Finances team helped eligible families increase their household incomes by an average of just under £6,000 a year and the parent advisors on our helpline responded to nearly 10,000 enquiries from parent carers.
More than 2,700 children and parent carers attended one of our family events to connect, learn and share their experiences. At the same time, our By Your Side team reached over 1,700 families with seriously sick and disabled children in hospitals across the UK, providing crucial advice to navigate our complex systems of health, social care and education support. Through this support, families were empowered to get the benefits they are entitled to at a time when they needed it most.
Making a difference together
In a year of huge political change, we’re proud to say that with your help we successfully influenced some key government decisions in 2024 like increasing the earnings limit on Carers Allowance so carers can earn more without losing this essential benefit. We also supported a parent carer’s fight to change England’s free school meals guidance ensuring that schools must now provide an alternative to disabled children who can’t access their free school meal in the usual way.
More recently, over 4000 shared your experiences with us by taking part in our Counting the Costs research, shedding a light on the devastating impact of delayed assessments for children with additional needs, reduced access to therapies, dwindling health and social care services and lack of suitable school places.
We are hugely grateful to the thousands of you who made your voices heard and worked with us to make positive change for families across the UK – whether through writing to your MP, participating in our surveys or speaking out in the media.
Help us be there for families when they need us in 2025
The need for Contact’s support has never been greater. Families with seriously ill and disabled children face increasingly difficult challenges, and we’re committed to being there for them every step of the way.
But as a charity, we rely on the generosity of our supporters to continue offering life-changing help.
This winter, if you’re able, please consider donating to our Lifeline Appeal. Your gift will help us provide essential advice and emotional support to families, preventing financial crises and easing the turmoil they face daily.
Alternatively, why not kick off your new year with a resolution to make a difference in 2025? You could join our DinoDay Facebook Challenge in June or sign up to Contact’s Weekly Lottery at any time of the year for the chance to win up to £10,000 every Friday!
Together, we can make 2025 a year of transformation for families with disabled children who need us most. Thank you for being an essential part of this journey.
Contact is delighted to announce the appointment of our new Chair of Trustees, Vanessa Longley.
Vanessa, an experienced leader in the not-for-profit sector, will replace our outgoing Interim Chair Angela Kitching. Angela has helped lead Contact for the last year, and before that was Deputy Chair and Trustee for six years.
Vanessa is parent to a disabled young person. She has benefited from Contact’s support as she went on her own journey through diagnosis and seeking support for her daughter.
Personal passion for supporting families
Vanessa is currently the CEO of Chance UK, reaching children aged 5-14 at their earliest point of need to provide 1:1 support. She brings a wealth of senior leadership experience, having worked as interim CEO at YoungMinds and with over 25 years in children’s and healthcare charities including Mencap and Havens Hospices.
Vanessa said: “I am thrilled to join Contact as the new Chair of Trustees, which unites my personal passion for supporting families and lived experience of raising a child with additional needs. Contact’s dedication to supporting and uniting families, while empowering them to advocate for others, deeply resonates with me. I look forward to working alongside this amazing community to make a meaningful impact.”
Vanessa is passionate about amplifying the voices of families with children with disabilities and additional needs and putting their experiences at the heart of everything from advocacy and services to fundraising and communications. She is also a qualified bereavement counsellor and a Trustee for SignHealth.
Vision and drive
Anna Bird, CEO of Contact, said: “We are delighted to have Vanessa as Contact’s Chair of trustees. Both her personal and professional experience, as well as her vision and drive to shape change, will be a huge benefit to Contact as we move forward and launch our new strategy.
“Contact has a hugely important role to play in creating social change for families who need it most. Vanessa’s leadership will help us in our ambition to do that.”
The Darzi review into the state of the NHS has been published this week. In this story we summarise what the review found and what Contact wants to happen next.
What is the Darzi Review?
After the election, the new Labour government asked Lord Darzi, a surgeon and former health minister, to investigate issues within the health service. The aim was to highlight areas for a longer-term improvement plan.
The results of the report are now in and describe the NHS as being in “serious trouble”.
“Devastating, heartbreaking and infuriating” is how Prime Minister Keir Starmer summed up the findings shortly after. However, he also said that the NHS was “broken but not beaten”.
What does the report say?
The report describes the NHS as being in a “critical condition”.
Describing long waiting times in A&E causing thousands of extra deaths and higher cancer mortality rates than other countries, the report makes for difficult reading.
The report notes a rise in multiple long-term conditions amongst young people, including mental health, asthma, obesity and diabetes. They are also waiting longer than adults to access healthcare.
Many families have, however, welcomed the spotlight finally shone on what they describe as a “crisis” amongst children and young people’s health.
“I am relieved that someone is saying what we have all been experiencing for years – maybe this will actually mean things change for the better”.
Katie, parent carer to Thomas who is 16 and has complex learning disabilities.
Lord Darzi also highlighted that factors such as unsuitable housing have been “moving in the wrong direction over the past 15 years”. This is an area that we continue to campaign on.
Dire state of social care
Lord Darzi is also concerned about the “dire” state of social care. This he said was not “valued or resourced sufficiently”.
He highlighted the ever-growing gap between people’s needs and publicly-funded social care and the burden this is placing on families and the NHS. Again, we highlighted this in our roadmap for the new government.
What is the government doing in response?
The government has announced that it will publish a 10-year plan to reform the NHS. This is due for publication in spring 2025.
What we want to see
The 10-year plan must prioritise health services for disabled children, including focusing on reducing waiting lists for assessment and diagnosis, and access to special equipment and therapies.
The plan must have clear goals on reducing health inequalities that disabled children from Black and Minority Ethnic communities experience.
Contact is delighted to announce that the Free School Meals campaign, set up by parent carer Natalie Hay, has taken top prize in the Disability category at this year’s Charity Awards, the longest-running and most prestigious awards scheme in the charity sector.
Contact was recognised for our work supporting and amplifying the parent-led campaign to ensure eligible disabled children don’t miss out on their free school meal.
Together with parent campaigner Natalie Hay and her son Matteo, we were honoured to be invited to a black-tie ceremony at the Royal Lancaster Hotel in London, hosted by broadcaster, commentator and writer Baroness Ayesha Hazarika. There we were presented with a trophy alongside the nine other category winners.
Working collaboratively
Anna Bird, chief executive at Contact, said: “We are very proud to win this award, which is testament to the hard work of the Contact campaigns team and our ethos of working collaboratively with parent carers.
“Campaign leader, Natalie Hay saw discrimination taking place and decided to take a stand on behalf of all parent carers. That is the strength of the parent carer community. We were honoured to work alongside Natalie and other parent carers to effect change and ensure that eligible disabled children don’t miss out on the free school meal they are entitled to.”
Proud of this prize
Matt Nolan, chief executive of Civil Society Media which organises the Charity Awards, congratulated Contact on winning the highly-coveted award. He said: “For 24 years, the Charity Awards has been shining a spotlight on the vital and inspiring work that UK charities carry out right across the country. In 2024, the sector is contending with soaring costs, rising demand and shrinking donations, yet the resilience, ambition and innovation in these applications continues to impress and inspire us. In a year of record entries, Contact should be hugely proud of this prize.”
Contact’s research found that 164,000 disabled children were missing out on their free school meal due to their disability or sensory needs, or because they are unable to attend school due to illness or waiting for a suitable school place.
The law is clear that they should receive an alternative such as a food vouchers in lieu of the meal, yet thousands weren’t.
Parent Natalie Hay led the campaign and fundraised to mount a legal challenge to stop disabled children missing out on free school meals, and Contact joined her fight. Together we successfully convinced the government to admit that its current practice discriminated against those who couldn’t make use of the school meals. The government committed to update its guidance making clear schools have a duty to provide a reasonable adjustment such as a supermarket voucher. The guidance was published in March 2024.
If all families who are eligible take advantage of the vouchers, the gain to those families would be around £93m.
We are very grateful to Natalie Hay, Ian Byrne MP and solicitors Rook, Irwin and Sweeney for supporting the campaign. We couldn’t have achieved the win without them.
If your child is missing out on their free school meal
We have template letters to help those missing out on a free meal and want to claim vouchers instead.
We are delighted to be partnering with Make-A-Wish UK to offer some of the families we support the opportunity to experience a magical wish in 2024.
This month several families Contact supports, who have a child with a critical condition, will enjoy a Make-A-Wish Disney experience holiday in Staffordshire.
The families are gearing up to enjoy a two-night magical break in the UK. During the trip they will get to meet their favourite Disney characters, as well as enjoy themed shows and accessible activities.
By Your Side hospitals project
Ruth Stone, Senior Parent Adviser at Contact, said: “We were delighted to be able to offer families we have supported through our By Your Side hospitals project and some of those who have supported our campaigns, the opportunity to have a magical wish in 2024.
“We hope they all have a wonderful time during their Make-A-Wish Disney experience holiday this month, they really do deserve it.”
Emma Paul and her two boys Leo, who has the rare genetic condition KPTN, and Joe have just returned from their trip. Emma said: “It could not have been better. Seriously, they thought of everything and then some and it’s safe to say Leo had the time of his whole life! Joe also really appreciated being around other siblings and I loved being around other families in the same boat. Strange to see loads of other people loading up syringes for meds and doing tube feeds at the dinner table same as me.”
Stephanie Sherwood, Head of Wishgranting at Make-A-Wish UK said: “Our goal at Make-A-Wish UK is to bring happiness and joy to children with a critical illness. From the moment they are diagnosed, the simple pleasures of childhood and family life are replaced by worry, disruption, medical appointments, financial worries and isolation. Wishes provide an opportunity to choose something positive to look forward to and the chance to be a child first and a patient second.
“We are proud to be partnering with Contact, their support will help us to reach more children who can experience the magic of a wish here in the UK.”
Need advice about holidays?
As the summer holidays are fast approaching, do you need advice about accessible and affordable days out and holidays? We have lots of advice and information on our holidays, play and leisure web pages.
We are also holding a Facebook Q&A on holidays and leisure on Thursday 20 June 10-11.30am. Sign up to our private Facebook group to take part and get advice from our helpline parent advisers about all things holidays and leisure.
Following the success of Contact NI’s rare conditions conference in January, a second event has been announced for next month in Northern Ireland.
“Supporting Children and Families living with Rare Diseases in Northern Ireland” will take place on Wednesday 15th May from 9.30am-1.30pm at the Dunsilly Hotel in Antrim.
The free half-day conference is open to anyone caring for or supporting a child or young person with a rare condition. It will bring together parent carers and professionals to share experiences, find out about information and resources, and create a space for conversations and connections.
During the event, Contact will be launching a new report detailing some of the key findings from our January conference. The programme also includes taster workshops for parent carers and professionals, a Q&A panel discussion, and an exhibition hall where a number of local and national organisations will be on hand to offer information and support. The conference is being delivered in collaboration with the Northern Ireland Rare Disease Partnership, the Pears Foundation and Dormant Accounts Funding NI.
A free buffet lunch will also be provided at the end of the morning.
For more information and to book a place, please visit our Eventbrite page.
Since then, we’ve been working in partnership with Alder Hey Children’s Trust, Edge Hill University and the North West National Network of Parent Carer forums ( NW NNPCF) to develop this work further.
We know that many disabled and neurodivergent children and young people from under-served communities such as Black, Asian and minority ethnic groups and Traveller communities have less access to healthcare and poorer health outcomes. They can face discrimination, disadvantage and exclusion and have less choice and control about their health care.
So far, research in this area has been limited. So this project offers a unique opportunity for us to work in partnership with community members to explore what could help improve access to healthcare for disabled and neurodivergent children, young people and their parent carers.
What progress have we made so far?
We are currently working with three communities – Gypsy, Roma and Traveller families, refugee and asylum-seeking families and parent carers with disabilities and neurodivergence – and community advisers to listen and learn more about their experiences of accessing health care for their children. So far, we have:
Talked to parent carers with a disability and/or neurodivergence to plan how the research project will work within each community, including the best ways to collect information from them. We have co-produced a survey for parents with our parent advisory group.
Worked with young people and community advisors to help us develop our plans and hear more parent carers from Gypsy, Roma and Traveller families in Rochdale. This includes hearing from children and young people in the area, including two school-based ‘story telling’ activities.
Liaised with two charities in Liverpool who have linked us up with refugee families with disabled and neurodiverse children. The charities are now advising us on how we should work with families to gather data, including planning interview scripts and interpreters. A charity in Manchester and another in St Helens is linking us with young people with SEND and young people who are refugees, to advise on how we will hear young people’s views and experiences.
What have we learnt?
Although the project is still in it’s early stages we have already learnt that:
We should never assume different community groups all want to share their views and experiences in exactly the same way. We found that while some parent carers will be happy to complete a survey, for others a survey is not helpful. Some families would like us to talk to them in their own homes and others might be willing to take part in a group online discussion.
Culture and language need to be considered carefully because they can have a huge impact on how we should be asking questions and gathering views. For example, for the Roma Gypsy community, storytelling is important so we’re using storytelling approaches to support conversations.
It’s important to learn about each community’s culture and circumstances before starting conversations. Working with community leads can help demonstrate our respect for communities and willingness to listen and develop culturally appropriate approaches.
Last year, we had the privilege of supporting 291,000 families across England, Scotland, Wales and Northern Ireland with our advice and information. This includes helping eligible families increase their household incomes by an average £5,400 a year, through our Family Finances team.
More of you than ever before made use of our Listening Ear service to find emotional support, practical advice and a shoulder to cry on and over 20,000 of you are members of our private Facebook group sharing advice and supporting each other.
Help us be there for more families in 2024
We just wouldn’t be able to do what we do without the generosity of our supporters so, if you can, please consider helping us to be there for more families in 2024.
Together we are making a difference for families with disabled children
Huge thanks to the thousands of you who took action last year to improve things for your family and others by writing to your MP, filling in one of our surveys or speaking out in the media. And with more than 200 of you becoming a Contact Changemaker, we continue to make sure parent carers are at the heart of our policy and campaigning work.
355 fantastic families took part in our annual DinoDay fundraiser and raised an incredible £15,000 for Contact – and we were delighted that 5 big £1,000 winners of our weekly lottery were all parent carers like Samantha.
Nearly 128,000 parent carers across England are now members of their parent carer forums, working in partnership with their local authorities, health providers and education settings to make sure that services in their area meet the needs of disabled children and their families.
Our online Fledglings shop celebrated 25 years of providing products designed for children with additional needs in mind and we made it more accessible to families whose first language is not English by making it available in a number of different languages for shoppers.
We ran our first ever Rare Conditions conference in 2023, giving parent carers of a child with a rare condition the chance to meet and share experiences and learn more about Contact’s rare conditions work.
Take care and remember, we’re here for you in 2024 whatever your child’s condition and whenever you need us.
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