There may be times when you need support from a professional. If you are feeling like you are struggling emotionally you can contact your GP for a referral to an NHS counsellor.  If you need support with your child you may be referred to your local Child and Adolescent Mental Health Services (CAMHS).  However, there can be long waiting times for these services and the provision is often time-limited.  Other options are outlined below under Organisations or Private Practitioners.  

It can also help to find other parents in a similar situation, or with a child with the same diagnosis (or undiagnosed). There are many Facebook groups and blogs so it can be worth searching online. 

Carers Trust
Carers Trust is a major charity for, with and about carers. We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.  To find your nearest Network Partner, call 0844 800 43610844 800 4361 or visit Carers.org.  Carers Trust also supports carers through online services Carers.org, babble.carers.org and matter.carers.org.

Carers UK 
Carers UK is here to make life better for carers. Looking after someone can be tough, but you’re not on your own. We are here to listen, to give you expert advice and information that is tailored to your situation, to champion your rights and campaign for lasting change and to and support you in finding new ways to manage at home, work or wherever you are.  Telephone: 020 7378 4999  Email: [email protected]

Cerebra 
Cerebra offer a range of different services for families with a child with brain conditions. They have a dedicated Sleep Advice Helpline on 0800 328 1159 or [email protected].  Telephone: 01267 244200.

There is also a helpful booklet on Looking after your own wellbeing as a parent carer and further support here.

Challenging Behaviour Foundation
The Challenging Behaviour Foundation (CBF) offers support via email or telephone to families with a relative who has severe learning disabilities. ‘Severe learning disabilities’ means that the person has no speech or very limited speech, and requires support with everyday tasks like dressing and washing. The CBF provides a range of information resources and can also link families for peer-to-peer support. Telephone: 0300 666 0126. Click here. 

The Children's Trust
The Children's Trust is the UK's leading charity for children with brain injury.  We provide expert rehabilitation, education, therapy and care at our specialist centre in Tadworth, supporting children and families across the UK. We also offer services in communities around the country and online support for parents.  For further information on our services, please visit www.thechildrenstrust.org.uk.

Counselling Carers
Counselling Carers offers high quality, specialist counselling to carers. Counselling Carers was set up by a psychotherapist and parent carer who recognised that carers often receive little or no emotional support as they look after children and loved ones with complex needs. Counselling Carers offers space for parents and carers to process their own feelings, find restoration and healing, and be empowered to be resilient.  Contact us at [email protected] or on 07309 255133

Couple Connection
Couple Connection provides a wide range of articles, self-assessment tools, activities, quizzes, exercises and courses to help you to improve and strengthen your relationship including a dedicated service for those with children with additional needs.

Down's Syndrome Association
DSA offers a listening Service for parents, parents to be or family carers of people who have Down’s syndrome. Our listener will listen to your story and reflect what you say. They will encourage you to explore and process your thoughts and feelings and occasionally summarise what you have said. They will not counsel or advise. If appropriate, they may suggest other forms of support that could help you or direct you to resources. Further info here. 

Emotional Respite Disability Counselling Service
Founded by Helen Rutherford in 2014 to provide specialist support to individuals affected by disabilities and illness. Support through diagnosis, illness, accidents resulting in injury and everyday living - not only the individual but also their family, partners and carers. Helen works in a variety of mediums to make this service more accessible. Online counselling is offered by video conferencing, audio, instant chat or e-mail. Telephone Counselling is offered to UK residents only. A face to face service is available in Newcastle Upon Tyne.  Click here. 

Face2Face
Face to Face offers a free and confidential 1:1 befriending service for parents of children with a disability. Have you recently learnt that your child has a disability? Perhaps the news came as a complete shock to you? Maybe you have known about your child’s disability for a while but are finding things difficult at the moment?  If you are the parent/carer of a disabled child, we can help.
 
All our befrienders are parents who have been trained to give the best possible support to others. As the befrienders are parents themselves, they can remember how they wanted to talk to someone who understood what they were feeling . Many people find it invaluable to have another parent who can simply listen and understand. Click here for more information on the Parent Befriending Service.

Grandparents Plus
Somes children are looked after by other relatives or friends other than their parents. Grandparents Plus are the national kinship care charity.  

Harry's Pals
Harry’s Pals is a charity set up to support the emotional needs of parents who have recently found out that their child is severely Ill or disabled. Founded by Hayley Charlesworth who is also a parent carer, Harry’s Pals was set up to bridge the gap in emotional support that she and many other families experience. 

Harry’s Pals offer free bespoke counselling and therapy services that are right to meet the needs of parents going through a heartbreaking time. The charity also offer short breaks away to parents who need to take some time out on their own or with the rest of their family; allowing them some much needed time out to relax, recharge and make precious memories. 
If you would like to find out more about Harry’s Pals please go to: www.harryspals.org. If you are a counsellor or therapist and would like to talk to us about ways in which you can support families  please email Hayley at [email protected].

Home Start
Home-Start volunteers help families with young children deal with the challenges they face. They support parents as they learn to cope, improve their confidence and build better lives for their children.  Although not specifically for families with a disabled child, many home start services will do things locally, for example, Home Start Barnet provides support for families with a child with autism.  To find your nearest home start click here. 

Hope for Paediatric Epilepsy
HOPE for Paediatric Epilepsy - London, is a charity run by a team of volunteers for children with epilepsy and their families. Over the past 8 years the charity has grown and now supports many more families through free, monthly clubs based in Whetstone. These are open to anyone that can travel to the venue and provide a chance for children with epilepsy and their siblings to play games, do arts and crafts, use the adapted soft-play room and playground and take part in hosted activities (such as entertainers) every month. The parents also have the chance to talk, exchange information and relax in an informal setting with others who are in a similar situation and understand the difficulties of caring for a child with epilepsy. They can even get a manicure if they choose! The charity also provides free days out and a Christmas party.  www.hopeforepilepsylondon.org.uk/ Facebook: @HopePaediatricEpilepsyLondon and Twitter: @HopeEpilepsy

KIDS
An established national charity, KIDS leads the way in providing disabled children and their families with support to thrive, not just survive.   We ensure disabled children from birth to 25 have the opportunity to learn, play, build friendships, gain confidence and improve their wellbeing and we provide vital time, emotional and practical support to parents and siblings.
Support we provide includes parentforums,  befriending and keyworking.  For more information visit our website.

LAPIS
LAPIS (London Accessible Psychotherapy Independent Service) provides specialist counselling and psychotherapy to people affected by disability and life changing health issues.  LAPIS offers an affordable service to disabled people, their family and carers.  A sliding scale is in operation so you can pay according to what you can afford and therapy is available on an ongoing basis.    Telephone: 020 8369 6088 | https://lapis.org.uk/  | [email protected]

Mencap
Mencap's Learning Disability Helpline is available from 9am-5pm, Monday to Friday. Tel: 0808 808 1111 or email.
Our advisors can offer you free advice and information about learning disability and help you to find the right support and Mencap services in your area.  FamilyHub is always available for parents and family carers of people with a learning disability. It's a place to share your triumphs and challenges with people who really understand. Take a look around and have a conversation.

MumsAid
MumsAid is an award-winning charity providing pregnant women and new mothers in S-E London with specialist counselling and support for emotional or mental health difficulties: https://www.mums-aid.org/ 

Its services include Mighty Acorns, a specialist support service for parents of babies who have complex medical conditions or who have been diagnosed with, or are at risk of developing, physical, sensory and/or learning disabilities. Ongoing, adaptive support is provided through weekly groups from referral until their child’s second birthday, co-facilitated by MumsAid counsellors and experienced parent volunteers. The service also offers advice and guidance with navigating benefits such as the Disabled Living Allowance, council housing, health and social care assessments, and appropriate education (in partnership with the SEND Early Years 0-3 Keyworker).

Murmuration Community Therapy
Murmuration Community Therapy run nurture groups for parent carers living in Bristol and the South West. These are intimate online/in person circles of SEND parents, meeting for 8 weeks to find belonging, support and space to process the big emotions. Using compassion-focused approaches led by a qualified therapist, this course helps parents to stay emotionally well and find friendship with others on a similar path. After the course has finished, nurture groups are supported to continue meeting if they would like to, with half-day retreats and monthly drop-in sessions providing ongoing opportunities to keep connecting up with people who get it.

Themes covered in the groups include:
• the story of you and your child so far
• the unique gifts that our children bring to the world
• experiences of grief and loss
• managing guilt
• developing self-compassion
• reflecting on the impact of relationships with friends and family
• exploring ableism in society and its impact on the parent carer experience 
• developing sustainable practices to nurture mental health

Spaces are free/by donation, and new groups start on a regular basis. If you would like to register your interest or find out more email: [email protected] 

National Autistic Society
Advice and support for people with autism and their families. Advice and information as well as support programmes in the community for families. Parent to Parent Emotional Support Helpline Telephone: 0808 800 4106 (leave a message and they will call you back or complete the online enquiry form). 

Non-verbal Affective Care
NAC is a community interest company dedicated to the emotional wellbeing of children and adults with severe and profound intellectual disabilities and complex needs. They have a number of 'how-to' guides on wellbeing activities and experiences, courses and events.   Sign up to the Newsletter - NAC Wellbeing

We are the only UK charity dedicated to supporting those affected by HIE (hypoxic-ischaemic encephalopathy). The nature of HIE means that outcomes can vary greatly, and the impact on parents, siblings and the wider family can be huge. We offer practical, financial and emotional support, wherever a family may be on their HIE journey. One of our main focuses is on mental health, especially during such difficult times with the effect of Covid19. We can arrange specialised counselling (over the phone, so no travel required), with a trained therapist, and ensure that no HIE parent feels they are on their own. Please don’t hesitate to get in touch if you would like a chat or to find out more about what we do.  Find out more online at www.peeps-hie.org or on social media @PeepsHIE

Rainbow Trust
When serious illness affects a child, family life is turned upside down and time becomes more precious than ever. Rainbow Trust pairs each family with a dedicated expert Family Support Worker to help them face and make the most of each new day. Families are overwhelmed with grief and worry about their child’s illness and getting them to hospital appointments that may be hundreds of miles away, all the while trying to keep life as normal as possible for their other children. Our Family Support Workers support the whole family with whatever they need so that families don’t have to manage alone.  For more information click here.

Reaching Families
Reaching Families is a parent-carer led charity established to “empower, inform and support parents and families of children and young people with special educational needs and disabilities in West Sussex”, through the delivery of the following services:-

If you would like any further information about our services you can visit our website or contact the office on 01903 366360 or email [email protected]

Relate
Relate provides relationship support, including talking to a trained relationship counsellor online for free via Live Chat. Parents can find a Relate counsellor near them at: https://www.relate.org.uk/find-your-nearest-relate and request a counsellor with experience of working with parents of disabled children. 

Respect for All
Respect for All provides counselling taking into account what ASC (Autistic Spectrum Conditions) or LD (Learning Disability) is and working from clients perspective as well as offering support and education to both clients and family members where necessary.  As all our counsellors have a personal understanding of ASC and or LD we feel we can offer a different perspective from most generic NHS counselling. We also offer post diagnostic work, we work towards helping clients get some self confidence through an understanding of what autism/ learning disability is for them, and work on all the issues not having this understanding has caused throughout their lives.  We also run autism support groups throughout the year, a mixed group and a female only group.   Based in Greater Manchester and try to provide services in all boroughs. Tel: 07902 223743 or email here.

Respond
Respond offers therapeutic help to people with learning disabilities and/or autistic spectrum disorders who have experienced abuse or trauma and support to their families.  Often distress in people with learning disabilities does not attract a helping response until they behave in ways that are potentially harmful to others.  Respond recognises this situation and is unique in offering therapy to both survivors and perpetrators of abuse in the same location.

Trauma may begin from birth both for the person with the learning disability themselves and for their family.   It may be compounded by inadequate care and support, institutional abuse and sometimes avoidable death.  The Family Support Service seeks to help by means of individual or group support, encouraging peer support, and advocacy in limited circumstances.  Family or individual therapy may be available.  Tel: 0207 383 0700   Email: [email protected]

Scope
Scope have a service called Navigate which is a national mentoring service that provides emotional support for parents of disabled children. Parents can find out more about this service by going to our website: https://www.scope.org.uk/family-services/navigate/ or contacting the service for further information: 0808 801 0510

We also have a service called Parents Connect. Parents Connect is a face-to-face service that is currently operating in London which is a six week support programme for parents and carers of young disabled people in London. This service will be expanding to Leeds in September 2019. To find out more about this service parents and carers should go to our website: https://www.scope.org.uk/family-services/parents-connect/ 
or email the service directly at: [email protected]

Seaside View Parent Counselling Service
Seaside View Parent Counselling Service is a free NHS service. It is available to families in Brighton & Hove whose children are being seen (or have been seen within the past 2 years) at Seaside View Child Development Centre.

We are a small team of BACP Accredited counsellors who specialise in providing individual and couples therapy to parents whose child/children have complex learning and developmental needs. We also run 2  8 week Mindfulness Based Stress Reduction courses for parents each year. We are employed by NHS and receive regular clinical supervision, ongoing training and managerial support. We are part of the Seaside View Child Development and Disability multi-disciplinary team. Eligible parents can self-refer by calling the counselling service direct line 01273 265787.

Sibs
Sibs supports brothers and sisters of disabled children and adults. 

Spokz People Wellbeing Community and Programme
Spokz People has an online wellbeing community and programme aimed at reducing the isolation of living with disaiblity. With an annual membership you have access to a community (forums, group and private chat), a buddy system so you can work together on your wellbeing as you go through the programme, and regular live events. The programme is aimed at both disabled people and their families with a specific area coming for family members soon. Reduced memberships for those on low incomes. You can find out more here.

Stroke Association (Childhood Stroke Project)
The Stroke Association offers a support service for families affected by stroke in childhood. For more information, please click here.

Together for Short Lives
Together for Short Lives is a UK wide charity that, together with their members, speaks out for all children and young people who are expected to have short lives. They are here to help children and their families to access specialist children’s palliative care services when and where they need it. Together for Short Lives supports all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care to children and families across the UK.  Together for Short Lives provides a range of support including a  free helpline (see below), a Facebook group, a host of resources, and an advocacy service that can provide free legal help to families.
 
The Together for Short Lives website is also a hub where families and professionals can find information and resources, as well as their handy service directory .  Email address: [email protected]   Free helpline: 0808 8088 100 (open 10am-4pm Mon-Fri) Twitter handle: @Tog4ShortLives     Facebook: togetherforshortlives

Unique offers contact with families with an affected member who has the same rare chromosome or gene disorder or, who has similar symptoms or practical concerns, irrespective of specific chromosome or autosomal dominant single gene disorder. It produces a comprehensive range of family-friendly, medically-verified information guides on a variety of rare chromosome and gene disorders.  Unique co-ordinates families to assist in research and has private facebook groups for registered members. It publishes a magazine three times a year. Unique hosts occasional study and family conference weekends. Unique has over 27,000 affected members and many relevant professional members worldwide in 116 countries.  
Tel: 01883 723356 Mon-Fri (24-hour answering machine)  E-mail: [email protected]

WellChild
WellChild is the national charity for children with serious health needs and their families. More than 100,000 children and young people are living across the UK with serious or exceptional health needs. Many spend months, even years in hospital simply because there is no support enabling them to leave. Meanwhile, those who are at home face inconsistent and inadequate levels of support.  Through a nationwide network of children’s nurses, home and garden transformation projects, and family support services, WellChild exists to give this growing population of children and young people the best possible chance to thrive: properly supported at home, together with their families.

Please click here for the WellChild Information Hub, which has lots of articles and resources for children and young people with serious health needs, their siblings, and parent carers.

YoungMinds
YoungMinds offer free, confidential online and telephone support, including information and advice, to any adult worried about the emotional problems, behaviour or mental health of a child or young person up to the age of 25.
The YoungMinds Parents Helpline is open from 9.30 to 4.00pm, Mon- Fri - 0808 802 5544 (free for mobiles and landlines)

Affinityhub does not take responsibility for any of the professionals or organisations listed on this website. If you wish to receive further details or have any concerns over their practise you will need to contact them direct or their registration organisation.