We have developed this resource to signpost therapists to the information available for people who have been diagnosed with a neurological condition/ injury which may impact on their role as a parent. We have also provided some information relating to people caring for a parent with a neurological condition/injury. We hope it is useful in helping you access the information you need and resources available.
Please note some of the links are not accessible to staff outside of the National Hospital for Neurology and Neurosurgery. We have tried to include all external links where possible.
Condition specific information related to parenting
- Multiple Sclerosis
- Motor Neurone Disease
- Parkinson’s’ Disease
- Stroke
- Brain Cancers
- Brain injuries
- General resources
The National MS Society is an American organisation whose website provides resources and advice on living with MS. The following links provide advice for parents and parents to be.
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This is an activity book for children, in storybook format, which explores living as a child of a parent who has MS and points to resources for older children regarding educating on MS.
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This link provides a comprehensive guide on pregnancy with MS.
The MS Society is an UK based charity whose website contains lots of advice on living with MS and the support available. The following link provides access to a page that provides advice and resources for telling your children that you have MS. There are also links to child friendly resources for under 10's intended for parents and children to read together.
MS Trust is a UK charity. They have developed a book by:
- looking at the concerns parents may have,
- things children may want to know and
- what other parents' experiences have been.
You can order copies via this link:
https://
They have also created a YouTube channel featuring videos on a range of different topics - everything from symptoms to how MS makes you feel. MSTV is here to help young people get to grips with MS.
The Motor Neurone Disease Association is a UK based charity providing support and advice to those affected by Motor Neurone Disease (MND). The following link takes you to a document providing advice and guidance on communicating with children and young people about MND.
https://www.mndassociation.org/support-and-information/children-and-young-people/young-carers-hub/support-for-young-carers/
ALS worldwide is a USA based non-profit organisation providing support for people with ALS. They provide guidance for parents with ALS.
Parkinson's UK is a charity providing advice to people affected by Parkinson's disease. They provide a wide variety of resources to help communicate about Parkinson's disease with children and young people.
The following link is for a guide for teenagers who have a parent or family member with Parkinson’s disease:
https://
The following link is also from Parkinson’s UK and provides advice and guidance for adults on discussing Parkinson’s disease with children and teenagers.
https://
The Stroke Association provides advice for people affected by stroke. The following document provides information for children whose family have been affected by stroke. The document contains easy to understand stroke education and advice on how to deal with difficult conversations.
https://
Different Strokes are a UK based charity focusing on younger stroke survivors, including people of working age. They can provide individual counselling. They have many resources including advice on family life, caring for a parent who has had a stroke, and accessing benefits. They also provide a resource pack on how to tell children if a parent has had a stroke. Resources are age friendly and are available in a variety of formats.
https://
Headway are a UK based charity providing information and support for people that have survived brain injuries (including strokes) and their families, carers and partners. Headway provides specific advice on the challenges of providing parenting following a brain injury:
The Brains Trust is a UK based charity offering advice and resources for people affected by brain cancer. The Little Brains Trust is a charity offering advice and support for children diagnosed with brain cancer.
The following document provides advice and guidance to adults on discussing cancer with children:
https://
The "Nurse Ted" series of award winning picture books are designed to support children's understanding of what is happening to a family member who is affected by a brain tumour, cancer, or other serious illness.
https://
‘Toby Teapots Daddy Has a Poorly Lid’ is a short story for children that use accessible characters to help explain to a child a parent being diagnosed with a Brain Tumour. It follows Toby the teapot's Daddy through the journey of the first signs and symptoms, diagnosis and treatment. A donation from the sale of each book goes towards supporting those affected by brain tumours.
https://
Headway is the UK-wide charity that works to improve life after brain injury. Through its network of more than 125 groups and branches across the UK, it provides support, services and information to brain injury survivors, their families and carers, as well as to professionals in the health and legal fields.
The following link provides information and advice on possible family reaction to a brain injury, and living with a brain injury as a family.
https://
They also have specific advice on the challenges of providing parenting following a brain injury:
General NHS advice signposts to local council, social services assessment to explore support with feeding, bathing, taking child out of house, getting ready for school/nursery, baby and toddler activity groups:
http://
Winston's Wish is a childhood bereavement charity. It has a helpline, email service support and they give advice about talking to children about death.
This website https:/
Home start is one of the leading family support charities in the UK. Their volunteers may be able to provide the following support:
- attending hospital appointments
- practical support, and
- financial support for medical equipment or to adapt the home.
The case study video is about a father with a TBI.
Baby care advice for people with a physical disability
The aim of this service is to provide advice to people with complex physical disabilities who take an active role in caring for a new born baby. An Occupational Therapist will discuss the client’s concerns and answer their questions. The client will also have the opportunity to practise caring for their baby with the help of a life-size weighted baby doll, so that they gain experience and confidence.
Health and social care professionals can make a referral. You can find referral forms here: www.
The service covers much of southern England, and sometimes further afield but is dependent upon having a contractual arrangement and funding available from the client’s local Clinical Commissioning Group.
The website is: https://
You can find the service information leaflet with further contact details here:
https://
This risk assessment can be used as an MDT or individually to help determine a patient’s ability to carry out their role as a parent and to assist in identifying any further treatment needs or action plans. You can find a PDF copy here.
Parental Ability Risk assessment
| Comments | |||
| 1. | Details of the patient's child/children or any children they care for (Names and ages) | ||
| 2. | Can the parent meet the following childcare needs: | Y/N | Comments |
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A) Hygiene and personal care needs eg. Dressing, bathing, brushing teeth and hair. B) Hydration and nutrition eg. Preparing a meal, preparing formula or bottles, holding child for feeding, cutting up food, recognising signs of hunger or thirst. C) Domestic care needs eg. Shopping, laundry, cleaning D) Ensuring safety eg. Recognising and responding to hazardous situations for the child/ children both in the home and outside, Recognise and Identify the need for medical attention/treatment. E) Emotional needs eg. Can they recognize their child’s emotional needs and respond appropriately to ensure the child feels loved and valued? Getting up with their child either during the night or early in the morning? F) Stimulation eg. Through play and educational opportunities? G) Guidance and Boundaries eg. Maintaining discipline, be a role model through demonstrating appropriate behaviour |
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| 3. | Are there any other agencies involved with the children? If so please give details, i.e. health visitor/ social worker/ school. | ||
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| 4. |
Do the child/children live with the patient? If not with whom and where do the child/ children live? |
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| 5. |
Does anybody else live in the property? Will the parent be expected to look after the child/children at any time of their own? If so give details |
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| 6. |
Do/does the child/children get to school and do they attend regularly? If no please provide details. |
Completed by:
Date:
- The Care Act 2014
- Summary
- Health and Care Act 2022
- The Children and Families Act 2014
What role do local authorities play in care and support?
Local authorities need to make sure that people who live in their areas receive services that prevent their care needs from becoming more serious, or delay the impact of their needs.
Local authorities need to provide comprehensive information and advice about care and support services in their local area.
What is the assessment process?
An assessment is how a local authority decides whether a person needs care and support to help them live their day-to-day life.
The assessment must consider a number of factors, such as:
- the person’s needs and how they impact on their wellbeing
- the outcomes that matter to the person
- the person’s other circumstances - for example, whether they live alone or whether someone supports them.
The aim is to get a full picture of the person and what needs and goals they may have.
What are the requirements for assessment?
As part of the process, the authority must consider other things besides services that can contribute to the desired outcomes. In addition to this whether any universal preventative services or other services available locally could help them stay well for longer.
The regulations which support the Act, ensure that the assessment is appropriate and proportionate, so that people have as much contact with the authority as they need. In addition, they require the authority to consider the wider needs of the family of the person (for instance, if there is a young carer).
How does the authority determine who has eligible needs?
Determining eligible needs is important to work out, as the local authority must meet the adult’s eligible needs for care and support. The person will have eligible needs if they meet all of the following:
- they have care and support needs as a result of a physical or a mental condition
- because of those needs, they cannot achieve two or more of the outcomes specified
- as a result, there is a significant impact on their wellbeing.
The outcomes are specified in the regulations, and include people’s day-to-day outcomes such as dressing maintaining personal relationships, and working or going to school.
Who is a carer?
A carer is someone who helps another person, usually a relative or friend, in his or her day-to-day life. The Care Act relates mostly to adult carers – people over 18 who are caring for another adult. This is because young carers (aged under 18) and adults who care for disabled children can be assessed and supported under children’s law.
The Children and Families Act creates a new ‘birth-to-25 years’ Education, Health and Care Plan (EHC) for children and young people with special educational needs , and offers families personal budgets so that they have more control over the type of support they get. In some cases, where a person is over 18, the ‘Care’ part of the EHC plan will be provided for by adult care and support, under the Care Act 2014.
For children and young people with special educational needs, the act aims to:
- Get education, health care and social care services working together.
- Tell children, young people and their parents what they need to know about their disability or special educational needs.
- Make sure children, young people and families know what help they can get and give them more say about this help.
- Set up one overall assessment to look at what special help a child or young person needs with their education, and their health and social care needs, all at the same time.
- Give a child or young person just one plan for meeting their education, health and social care needs, which can run from birth to age 25 if councils agree that a young person needs more time to get ready for adulthood.
Young carers
The Care Act 2014 does not deal with assessment of people under the age of 18 who care for others. The Children and Families Act 2014 gives young carers a right to a carer's assessment and to have their needs met. The Care Act and the Children and Families Act together should ensure that the needs of the whole family are met and inappropriate caring for young people is prevented or reduced.
Adults caring for disabled children
Regulations under the Care Act set out how assessments of adults must be carried out to ensure the need of the whole family are considered. This could include assessing what an adult needs to enable them to fulfil their parental responsibilities towards their children, or to ensure that young people do not undertake inappropriate caring responsibilities.
Under the Children and Families Act 2014 a local council has a duty to provide an assessment to a carer of a disabled child aged under 18 if it appears that the parent carer has needs, or the parent carer requests an assessment.
Local authority social services
Support families and safeguard children who may be at risk of harm, whether from family members or others. Levels of support can vary within each local authority but they provide support to families who are in need of additional help and support, which is unavailable from schools, GPs, other health services, or community-based services.
Health visitor
Health visitors’ work with parents who have new babies, offering support and informed advice from the antenatal period until the child starts school at five years. They may work in teams or have sole responsibility for a caseload derived from the local area or a general practice list; they are usually based in children’s centres, surgeries, community or health centres. Health visitors visit parents through a minimum of five universal home visits from late pregnancy through to a developmental assessment at two years.
http://
The five key visits are those that all families can expect under the universal level of service. They are also mandated (i.e. local authorities have committed to deliver) as part of the first 18 months of the transfer of commissioning:
- Antenatal
- New baby
- 6 – 8 weeks
- 9 – 12 months
- 2 – 2 ½ years
https://
School nurse
School nurses work across education and health, providing a link between school, home and the community. Their aim is improve the health and wellbeing of children and young people. They work with families and young people from five to nineteen and are usually linked to a school or group of schools.
https://
Midwife
Midwives provide care and support to women and their families while pregnant, throughout labour and during the period after a baby’s birth.
https://
Young Carers
A young carer or their parents can seek support from the local authority. Once help has been requested, a social worker from the local authority must visit and see if the young carer needs any help.
- Peer support for young carers is available on YC Net to get advice and support from other young people.
- The Citizens Advice Bureau provides comprehensive information on money, benefits and rights.
- The NHS has information to support the needs of young carers, including information about carer’s assessments, respite and the rights of young carers.
http://
Childminders
A childminder is somebody who provides childcare for children in the childminder's own home for more than two hours a day. In England Childminders must be registered with Ofsted. Childminders in Wales must be registered with CSSIW and in Scotland; they must be registered with the Scottish Care Inspectorate.
https://
GPs
General practitioners (GPs) treat all common medical conditions and refer patients to hospitals and other medical services for urgent and specialist treatment. They focus on the health of the whole person combining physical, psychological and social aspects of care.
https://
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Child manner: step-by-step
Adult manner: alternates feet
Parallel play: 2 children, each plays alone, but comforted by the fact that another child is playing nearby.
Cruises: walks while holding furniture
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| Stacks 9 cubes | Grooms self (brushes teeth) | Partially dresses self |
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Complete sphincter control |
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| Equipment providers | |
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This article provides general advice and examples of types of equipment that could help with everyday tasks such as:
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https:// |
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Remap can provide bespoke equipment which is not available on the mainstream. Examples include an adapted pram for a wheelchair user. |
https:/ |
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Disabled Living Foundation is a charity that provides impartial information and advice on independent living aids. Its ASKSara service helps you find products. |
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Disabled parent charity provides advice on equipment both through its publications and informal forum. |
https:/ |
| Cotswold Cots: Make cots specially designed for wheelchair using parents/carers. It is high enough to get legs underneath and the bars of the cot slide open sideways in a ‘concertina’ style. Getting legs underneath means it is possible to sit facing the baby and get them in and out of bed without having to lift them over the top of the cot. |
Grawkins Rock Close, Carterton, Oxon. OX18 3BP Tel: 01993 842885 |
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Chicco 360 bucket-seat type highchair: Attaches to the table, making it easy to move close to and around without legs getting in the way of a wheelchair. It also swivels 360 degrees so baby can be seated in positions to look all around the room. |
Multiple suppliers |
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Hippychick Hipseat: Back supporting belt to assist with carrying child naturally on the hip. Can be adjusted to whichever side is most comfortable for the wearer. |
Tel: 01278 434440 |
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Swivelling car seat: The Maxi Cosi car seat can swivel left and right which may make it easier to get a child out of the car. It has various position for the child to sit or sleep. |
https:// |
| Forum advice | |
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Review of 10 parenting products from a mother with spinal cord injury (cot, harness, buggy |
https:// |
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Mumsnet Forum with opinions and advice about equipment and products available |
https:// |
Resources available at NHNN:
- Baby dolls x3
- Nappies
- Baby clothes
- Bottle
These can be found in NRU gym (cupboard in back of room).
Publications purchased from disabledparent.org:
- Carrying a baby or a child on a wheelchair; a practical guide for disabled parents
- One handed parenting; a practical guide for new parents
Page last updated: 16 January 2025
Review due: 01 January 2027