Giving care and family time

Dandelions blowing in the wind in a meadow

Caring to the end

A guide to end of life care and beyond for unpaid carers in Surrey

Giving care and family time

Here’s what you should expect as a parent carer in terms of providing care to your child and ensuring you and your family have the support you need for providing quality family life, including:

Child and family assessment

  • Your child should receive a multi-disciplinary and multi-agency assessment as soon as possible after diagnosis and returning home. This assessment provides the opportunity for you and your child to express what is important and to identify the needs of the whole family.   
  • The assessment process should include a team meeting involving you and key people from across different agencies and providers involved in the care of your child. This will avoid you having to repeat your needs and that of your child over and over again.  
  • The assessment should include your own needs and that of your wider family, including sibling carers and you should be central to the process and viewed as an equal partner with the professional team.

Things to think about:

  1. Ensure the multi-agency assessment fully involves yourself and all of the key professionals and is carried out as soon as possible after diagnosis.
  2. Make sure you and your child are central to the process and that you are encouraged to work in partnership with the team.  
  3. Ensure the assessment covers what is most important to you and your family as well as your child’s: health and symptoms; needs for aids, equipment and supplies; education and leisure, as well as your whole family’s emotional, practical, social, spiritual and cultural needs.
  4. Make sure you are given a copy of the assessment which is provided in a straightforward and jargon-free way.

Child and family care plan

This assessment should lead to a written care plan with clear outcomes that enable you, your child and other family members to have the best family life possible. It is a working document that is shared with professionals involved in your child’s care and provides the following details:

  1. Services and support needed to meet the assessed needs​ of your child, you and your family, including other children in your family.
  2. What will be provided by each service.
  3. Who is the lead professional to coordinate the plan. Often this will be a community children’s nurse. This person will be your main point of contact and with whom you can develop a strong relationship and partnership approach.
  4. Details of how to contact important people and out of hours services.
  5. When your child’s review will be carried out and how to ask for a review earlier if you feel a revised care plan is needed sooner.

Things to think about:

  1. Make sure you are consulted about which services and what type of support you want included in the care plan, as well as which services you want to share the document with.
  2. Ensure you are given a copy of the care plan and that it is provided in a straightforward and jargon free way.
  3. Ensure you know who the lead professional is and that they will act as a single point of contact for you, your child and your family. You should also know who to go to if you are unable to get hold of your lead professional and how to contact important people out of hours.
  4. Decide who you want the care plan shared with. It is worth remembering that your child’s interests will be generally best served by sharing the care plan with all those involved in their care and education.
  5. Make sure your other children understand what is in the care plan. If you feel you need help talking about your child’s care, ask for a member of the care team to explain things in a child friendly way.

Emergency/Advance care plan

Although it is hard to think about in advance, it can give you peace of mind if you have a plan in place for how you want your child cared for in an emergency or if their condition suddenly deteriorates. It is best to discuss these issues with your family and lead professional and get your wishes documented and shared with other professionals involved in your child’s care. 

Such a plan is referred to as an Emergency Health Care Plan or Advance Care Plan and can include the following: 

  1. Basic information about the child or young person and family  including demographic, contact, key professionals and summary of condition.
  2. Statement about who has responsibility for giving consent.
  3. Agreed approach to how to communicate and provide information to child or young people and parent carers.
  4. Outline of the child or young person’s life ambitions and wishes eg. family and other relationships, social activities, education, religious, spiritual and cultural beliefs and values influencing care.
  5. Record of significant discussions with child or young person and their parent carers.
  6. Agreed treatment plans for end of life care and objectives.
  7. 24 hour access to pain and symptom control – you should know who to contact and how to contact them at different times of the day.
  8. Preferred place of care and death.
  9. Organ and tissue donation.
  10. How to access emotional and spiritual support.
  11. ​Withholding treatment.
  12. Management of life threatening events, including,plans for resuscitation or life support.
  13. Specific wishes eg. funeral arrangements and care of the body.
  14. Distribution list for Advance Care Plan and date for review.

Ask your care team or Lead Professional about developing such a plan. For more information about advance care planning.

​Support with managing symptoms and care

You may find that, as part of their care plan, that you will have to provide personal care to your child, such as administering medication, using specialised aids and equipment and giving specialised treatments. It can prove to be a major worry to you, particularly as you will not want your child to be in pain or suffering as a result of the symptoms of their condition.  

Things to think about:

  1. Consider keeping a diary of your child’s symptoms so that you can share this with members of the care team. It also helps to identify changes in their condition which you might not otherwise notice when caring on a day to day basis.
  2. Make sure you know how to access medical or nursing support on a 24 hour/7 day a week basis should you have concerns about managing your child’s symptoms or personal care.

Continuing health care

A continuing health care package is likely to be required by your child or young person where their care needs cannot be met by existing universal or specialist services on their own. Your child or young person up to the age of 18 may have very complex health care needs because of their life limiting or life threatening condition and as a result require additional healthcare support at home and in the community.

There are specific criteria for NHS funded children and young people’s continuing healthcare which are significantly different to NHS Continuing Health Care for adults. For more information on the National Framework for Children and Young People’s Continuing Care which gives a step by step guide to the process, tools and how eligibility is determined.

In brief the process comprises three phases:

  1. The assessment led by a children and young person’s health assessor (nominated by your local Clinical Commissioning Group).
  2. Decision making – multi-agency forum/panel will consider the evidence and make a decision.
  3. Development of a continuing health care package.

Diagnosis of a particular disease or condition will not in itself determine the need for continuing care. Your child may have a rare condition which is difficult to diagnose, but will still have support needs. There should also be no differentiation based on whether the health need is physical, neurological or psychological.

The continuing care process should be fair, consistent, transparent, culturally sensitive, and non-discriminatory. Establishing whether or not continuing care is needed should NOT be determined by the existing care that your child is receiving or by who is providing it and paying for it.

To find out more information about Surrey’s continuing care service and how to contact the continuing care team.

Things to think about:

  1. The continuing care assessment must look at the whole needs of the family and include the preferences of your child and you and your family. Therefore it is important that you, as a parent carer, are meaningfully involved in the process.
  2. If following the decision phase it is agreed that your child is eligible then you and your child should be fully involved in how continuing care should be provided and what resources will be needed to deliver it.
  3. Make sure the continuing care is going to be reviewed on a regular basis.

Parent carer assessment

  • As with other carers, parent carers are entitled to a Carer’s Assessment as a way of finding out what your own social care needs are and how they can be best met. As part of this assessment it is important that your: job, training, education and leisure are considered as well as exploring the impact of your caring role on relationships within the family and your other parenting responsibilities.
  • If your child is entitled to social care support then a break from your caring role should form part of any package of support if this is something that you feel you need. Go to Taking a family break for more information.
  • Although parent carers have the right to a separate assessment, more often than not, it will form part of your child’s needs assessment undertaken by Surrey County Council’s Children’s Services.
  • To find more information about parent carer assessments and needs assessment of your child by Surrey County Council Children’s Services.

Emotional support for your child and family

As a parent our natural instinct is to protect. This may mean you want to delay talking to your child about their diagnosis and prognosis for as long as possible. However, research has shown that it is better to have honest and open conversations as early on as possible for the following reasons:

  • Children have a remarkable capacity to cope with their condition when they are given age appropriate information about their condition and they have the chance to ask questions.
  • Even very young children can sense when parents and other family members are upset or something is wrong.
  • As they grow older they will become increasingly aware of changes in their condition and wonder why they feel different to their peers. An explanation of their diagnosis and prognosis will help them to understand those differences.
  • Children increasingly have access to the internet and will search for information anyway. Often this information is inaccurate and can lead to unnecessary worry and anxiety.
  • Your child may want to protect you and avoid raising the subject despite wanting to talk about it. Your child will take the cue from you about whether they can talk about their concerns.
  • There is an expectation that your child should be involved as far as possible in managing and making choices about their own medical condition, which is difficult if they are not informed about their condition.
  • You may be worried about how to talk with your child about their diagnosis and prognosis. A good starting point is to listen to your child and find out what their understanding is. When they ask questions, you can give them the information they have requested. It is best to give out small amounts of information at a time and you may need to repeat some of the information. Create further opportunities for your child to ask questions when they feel ready.
  • Where possible it is helpful to have both parents available to talk to your child or perhaps another family member such as a grandparent or someone else close to the child. If your child is in hospital or a hospice you can ask staff to help you have these discussions.
  • Remember that any other children in your family are likely to have questions and concerns about their brother or sister. Generally speaking it is best to keep them in the picture but avoid giving them more information than your child with the life limiting condition, as this requires your other children to keep secrets. ‘Together for short lives’ has some wonderful information on this subject.

There are a range of sources of emotional support for your child and your family:

  • Spiritual caregivers from the appropriate faith for you. If you are in hospital or hospice talk to a member of staff about what spiritual care is available and ask if the appropriate person can be contacted. The hospital or hospice will have a chapel or multi-faith room. For local faith groups and contacts go to our Directory and Further Information.
  • A paediatric psychologist can help you and your child cope with the emotional demands of the illness. Ask for a member of the medical team or your GP to make a referral for you.
  • A social care worker can undertake an assessment of your child and yourself as a parent carer and these assessments should include exploring the emotional impact of the illness on your child and family. The social care worker can work with the medical team and professionals in the local area to make sure you get the emotional support you need and to help access appropriate additional support where available, including: welfare benefits advice, charity and social fund applications and liaising with your employer.
  • Your local children’s hospice can provide you and your child emotional support as well as a wide range of other services such as day care,respite breaks, telephone advice, hospice at home. Go to the Directory and Further Information for contact details.
  • Your family GP will be an important part of your child’s medical care and can provide emotional support for you and your child. They will often have a good understanding of the impact on your whole family and be able to refer for more specialist services to support you and your child’s mental health and wellbeing as necessary.
  • The Community Children’s Nursing Team will provide emotional support as well as nursing support and care in the home. Your local paediatrician will also give additional support as well as overseeing your child’s physical health care needs.
  • Action for Carers in Surrey can provide support to you and your family including siblings under the age of 18 and those siblings between 18 and 24. Providing care, this includes local carer support groups where you can meet other carers.

Education for your child

  • It may be that school is still a major focus of their lives. It is important to keep providing your child, as far as is possible, the opportunity to learn, develop, play and experience a normal life. School age children should be enabled to attend their own school for as long as they can, so that they can benefit from interacting with friends as well as receiving an education.
  • The school can also provide your child and your family with an important source of support, including giving you a break during the day.
  • If your child is no longer able to attend school due to their deteriorating health then education can continue through the hospital or hospice school or through the home tuition service for as long as your child is enjoying the experience and still learning.

Things to think about:

  1. Make sure your child’s school is part of the multidisciplinary team supporting your child.
  2. Keep your child’s school informed of your child’s health condition and any absences.
  3. Explore with the school how to help your child keep up with school work and any additional support they might need.
  4. Ensure the schools of any other children in your family are aware of the family situation so that adequate support can be given to them as well.

Aids and equipment

  • You may need specialist aids and equipment to care for your child. You and your child may be assessed by an Occupational Therapist from your primary care trust or children’s team who can inform you about the options and services open to you. Any aids and equipment should be included in your Child and Family Care Plan.
  • If needing specialist continence aids eg. nappies, talk to the health visitor or children’s nursing team for advice. Education and Resources for Improving Childhood Incontinence (ERIC) Helpline service provides support for children, parents and professionals who deal with childhood continence including problems such as: potty training, bedwetting, daytime wetting, constipation and soiling. 

Helpline: 0845 370 8008 on a Monday and Wednesday (9.30am-4.30pm)

Email: helpline@eric.org.uk

  • There may also be issues relating to the layout of your house and whether your housing meets your child’s needs. There may not be enough room to meet their care needs or to enable you to care safely. You may need a specifically adapted room or bathroom. Funding may be available from your local authority or you may need to have a housing assessment to see if your current housing will meet your family’s needs.
  • For more general information about types of aids and equipment available to parents caring for a child with an illness/disabilities go to the Disabled Living Foundation website.
  • Newlife is a charity for disabled children helps disabled and terminally ill children in the UK by providing equipment to help individual children as well providing nurse led information service and funding research. They have a special ‘Just Can’t Wait’ equipment service for families of terminally ill children. Call their Helpline: 0800 902 0095
  • Whizz Kids provides disabled children the vital equipment, support and life skills they need to reach their full potential. 

Transport

  • You and your child’s transport needs will be a crucial part of your child and family care plan. Getting the right help with transport issues can improve daily family life.
  • You can ask your child’s care team about getting driving lessons, accessing specially adapted cars to take bulky equipment or adapted car seats. You can also think about applying for the Blue Badge scheme for disabled parking.
  • To get mobility allowance your child must be under the age of 16. For the low rate mobility component they must be aged over five, and for the high rate mobility component they must be aged over three. If you are the parent for a young person over 16 and they have care or mobility needs, they may be able to claim a Personal Independence Payment instead.
  • The Motability Scheme helps you get mobile by exchanging your child’s higher rate mobility allowance to lease a new affordable car, Wheelchair Accessible Vehicle, scooter or powered wheelchair. If your child is awarded the highest rate of DLA mobility component, you may be exempt from paying Vehicle Excise Duty. 
  • For advice and information on home to school transport  you may find IPSEA useful.  

For more general information about transport for your child, including using public transport Together for short lives has a wealth of information on their website.

Transition into adulthood

With advances in medicines and technology more and more children with life limiting or life threatening conditions are now living into adulthood.

Transition into adulthood is not a one off event but is a process that takes place during your child’s teenage years and should start at around 14 years old tying in with the Year 9 annual review.  

The age at which your child enters adult services is likely to vary depending on where you live and your circumstances. Each service may have a different age when they transfer care from children to adults. Some children will access aspects of adult health care before they are 18, while others may still be supported by paediatric services after their 18th birthday. Ask each service what age the transfer will take place, who is taking over and how they are going to introduce you to the new service.

When your child reaches the age of 18, health and social care agencies will consider them an adult regardless of whether they are able to make decisions for themselves or not. If your child has the mental capacity to make decisions for themselves it is important that you recognise that there will be a move away from parent led decision making to young person led decision making. For decisions about health and welfare, the Mental Capacity Act 2005 applies to everyone over the age of 16. Find out more at the My adult is still my child website, it is a useful website which outlines the legal implications of the Mental Capacity Act 2005 and the changing role that parents have in decision making.

Five key standards should be met during the transition process:

  1. Every young person from age 14 should be put at the centre of transition into adult services and their family should be supported for their changing role.
  2. The young person is supported to plan for their future and is involved in assessments and in developing a comprehensive plan which reflects their wishes.
  3. Every young person has both an end of life care plan and plan for ongoing care and support in adult services.
  4. Children’s and adult services will work together to ensure smooth transition.
  5. Young people and their family are supported in adult services with a multi-agency team and given honest and realistic advice about what they can expect in terms of how their care and support needs will be met in the future.

Partnerships working between children’s and adult health services will be especially important for a young person with complex and life threatening health conditions and may need to include hospital and hospice care teams. For further information go to ‘together for short live‘.

Things to think about

  1. From the age of 14 years, healthcare professionals should begin to discuss with you and your child the plans for transferring to adult healthcare
  2. It is helpful if your general practitioner (GP) is involved as they can be a key point of contact as your child moves into adult services even if they have not had much contact with your child up to this point.
  3. Bear in mind healthcare professionals will change eg. continuing health care.  It is helpful for you and your child to be introduced to new staff and agencies as part of the transition process.
  4. If your child is aged 14 or over, has a profound learning disability or a mild learning disability with other complex health needs they will be entitled to a free GP annual health check.
  5. You and your child may not have access to certain services once they become an adult. For example, this could be Surrey’s children’s hospice St Christophers. Whilst more and more adult hospices are beginning to play more of a role with young adult people, they may not offer the range of support, services, therapies and short breaks that you are used to.
  6. Make sure you have parallel plans that will both help meet your child’s needs and wishes should their condition deteriorate as well as plans whilst their health remains stable.  Both should be reviewed regularly and documented in a format acceptable to adult services as well as children’s services. It is important a copy is given to your child’s GP.
  7. Your child will need your support to access a social life and relationships, important aspects of their wellbeing. Your local social care team can carry out a needs assessment thereby ensuring a care package is in place which will help to meet these needs.
  8. You may also find there will be changes to grants or benefits that you receive affecting the level of income coming into the home. However you may,find your child and yourself will be entitled to new benefits and entitlements. To find out more go to benefits and entitlements.
  9. Your child may wish to consider further education after 16 years of age.  You can discuss with them a number of options including full time education such as college, university or home education, work based learning such as an apprenticeship, specialist colleges offering tailored courses for young adults with profound and multiple learning difficulties.For local information about education and training options  
  10. There are also housing options you may wish to consider to enable your child to live as independent a life as possible for example at university, residential or supported living or living independently. To find out what local housing options.
  11. Your child may wish to enter employment or volunteering

Taking a family break

  • Surrey Short Breaks for Disabled Children funds voluntary organisations and SEND schools to provide short break services, including after school clubs, holiday schemes, home-care and more.  
  • The Surrey Children’s Disability Register is a voluntary register for a disability or impairment aged 0-18 years and living in Surrey. The register helps Surrey County Council plan and monitor services and also operates as a contact list to provide regular information and consultation about short break opportunities, funded by Surrey County Council, through the Surrey Short Breaks for Disabled Children Team. Telephone: 01372 832896 or register online.
  • If registered you can access a free Max Card which allows your family access to various activities around the country at a discounted rate. The scheme is also open to new registrations so anyone interested in receiving a Max Card should register using the details above. Once registered, families will automatically receive the discount card in the post.
  • Parent Carer Break Grants are payments made to support parents who have a disabled child under 18 living in Surrey, who are not currently receiving services from Surrey County Council Children’s Services and don’t have a social care worker. Parents cannot apply directly themselves, but anyone working with a family can apply on your behalf – such as: a carer’s support worker at Action for Carers Surrey, teachers and Home School Link workers, nurses and health visitors, Children’s Centre managers, Early Years Support coordinators, etc – having completed either a Child Assessment Framework form or Carer’s Assessment with you.
  • Parent Carer Break Grants can be used to fund a family holiday, a short break for parents, a training course for a parent, childcare to give a parent a break, a contribution towards your child accessing play or activities, days out, equipment to help you as a parent carer and much more. Once the application has been submitted, you will be contacted to discuss your needs, with a payment following shortly afterwards.  For more details, speak to any of the professionals working with you or your child, or phone the Short Breaks team on 01372 833638 or email shortbreaks@surreycc.gov.uk.
  • There are also a number of charities who can help you organise a holiday for a child with a seriously ill child with complex health needs, either on their own with other children or for you all as a family. Holidays can be provided in the UK or overseas and the criteria may differ depending on the schemes each of the charities runs. With some charities you can apply directly, but with others you may have to get a doctor’s referral. Most of the schemes can be accessed all year around and the holidays are generally free of charge. Insurance and a medical team with care staff are provided to make sure your child’s health needs are fully met whilst on holiday. For a list of short breaks or holidays for your family. You can also call the Together for Families Helpline on 0808 8088 100 for details of organisations that can help. The Carers Trust also provides a useful list of organisations providing holidays for carers and parent carers. 
  • The Family Fund is a UK charity which can provide ‘Take a break’ grants to enable families caring for a disabled or seriously ill child or young person to have the opportunity to choose how they would like to take a break, with a view to improving the quality of life, health and wellbeing of the whole family. The Family fund will also pay for washing machines, sensory toys, bedding, tablets, furniture, outdoor play equipment, clothing, and computers. Please note grants for a car, driving lessons, items already purchased or requests where health or social care has assessed a need and have a responsibility to provide an item or break will not be considered. 
  • Surrey Family Information Service (FIS) is a statutory service providing free impartial information and signposting for families with children aged 0 to 19 (up to 25 years for those with additional needs). The role of the service is to help families get the most out of the information and services available in the community and online. This could be something like helping you find out about local events and activities for your child, or pointing you in the right direction when things aren’t going so well and you need a bit of extra support.

Things to think about:

  1. It is important that you consider with your child’s care team how to access respite care so that you can have a regular break from caring. Parent carer breaks should be built into the child and family care plan.   
  2. Having a holiday or break for your child on their own or all together can make a massive difference to your quality of life and enables you to build important memories that you can all treasure. Although it may feel daunting organising a family holiday, make good use of the above local directories, different sources of funding and different charities that can help you.