Together for Short Lives
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Ongoing care

Mum with baby

If your child has a life-limiting or life-threatening condition, it is important that their needs, and those of your whole family, are assessed regularly so that the right support is put in place to allow you to enjoy quality time as a family.

Your child and their care needs are unique, but there are some universal approaches to care that can be applied. For example, you should expect to receive a multi-needs assessment from all agencies, and have one keyworker from the medical team to deal with your queries.

We’ve developed the following checklist that may be useful – if you feel you are not experiencing any of the considerations on this list you should raise this with your medical team or lead practitioner:

  • A multi-agency needs assessment should take place as soon as possible following diagnosis.
  • The assessment process should involve all agencies and providers so that you do not have to repeat your needs to different services and organisations.
  • You should be central to the assessment process and expect to work in equal partnership with your professional team.
  • Your child should be the central focus of the assessment and be involved in the process.
  • Care should be taken to include the needs of the whole family.
  • Your culture and personal beliefs should be respected.
  • Straightforward, non-jargon language should be used.
  • Issues of confidentiality and consent to share information with identified professionals should be discussed with you.
  • You should be given your own copy of the assessment information to keep.
  • It should be made clear who is taking the keyworker/lead professional role.
  • Professionals involved in the multi-agency needs assessment should have appropriate skills and local knowledge of what is available.

Top Tips

  1. You can request a review of your child’s care plan if they have to go into hospital, if there is a change in your child’s condition or if something happens within the family that affects your ability to cope.
  2. It can be helpful to find someone for your child to talk to outside of the family, such as a trusted member of staff at your local children’s hospice. Your care team will be able to put you in touch with a suitable individual or service.
  3. It is usually a good idea to keep your child’s school informed about the progress of their condition, to enable them to keep up with school work and maintain links with school friends. If you have other children, it can also be helpful to inform their school so that they can provide emotional support as needed
  4. It can help to keep a diary of your child’s symptoms so that you can share this with members of the care team.

As parents, you are the experts in your child’s care, and you should be encouraged and supported to feel in control and to work in partnership with the care team at every stage of your journey. It is crucial that support is provided for you and the whole family.

You can find lots of information to help support you in the care of your child on this website, and our helpline team is also available if you’d like to speak to someone about any aspect of your experience caring for your child.

Frequently asked questions

What benefits am I eligible for when caring for a child with a life-limiting or life-threatening condition?

The benefits system can be really difficult to navigate, especially when you’re not familiar with it. The best thing to do is to speak to a member of your care team – your health visitor, social worker or community nurse for example – and they should either know themselves what you are entitled to, or know who you should ask.

We provide more information about the benefits you might be entitled to you can also find good information at DirectGov.

My child uses a wheelchair now – can I get a special permit so we can park closer to the shops?

The Blue Badge scheme entitles certain groups of disabled people to park in parking restricted areas. It is available in most areas, but some city centres do not operate the scheme.

The Blue Badge scheme does not normally apply to children under two, but in England, Scotland and Northern Ireland, exceptions are made when children have certain medical requirements. You can contact the Blue Badge Helpline on 0207 944 2914 or 0161 367 0009 or visit the DirectGov website to find out more.

For more help with your transport needs see our information here.

How can I access Family Fund Mobility Support for my child under three?

If you have a disabled or seriously ill child under three, and would benefit from access to a car, the Family Fund Mobility Support programme could help. Please visit the Family Fund’s website to get more details and begin the application process.

What do I do if I am unhappy with the standard of support being provided?

If you feel that you have not received the standard of support you are entitled to, you may wish to make a complaint. There are processes in place as well as agencies that can provide you with support.

If you are unhappy with any aspect of care provided while in hospital, do make contact with the hospital’s Patient Advice and Liaison (PALs) team. Their details should be well publicised in the hospital but do call our Helpline on 0808 8088 100 to find the right number for you.

What happens if my child’s doctor and I do not agree?

Hopefully you and your doctor will be able to reach a decision that you are both happy with.

The doctor and the healthcare team should be there to support your decision as long as they believe your care choices are in the best interest of your child. However sometimes it is hard to reach an agreement. If you and your doctor cannot decide on a care plan on which you both agree there are other ways in which you can resolve things and achieve consensus through mediation.

Your first option is to seek a second opinion. Your consultant should be able to arrange for an independent second opinion. They can arrange for all the medical files and information about your child’s medical history to be shared with an independent consultant. The independent consultant may wish to see you and your child, but this may not be necessary. The independent consultant will assess your child’s condition and prognosis and will look specifically at why you cannot agree on a care plan. It is their role to ensure that the care plan is in your child’s best interests.

They will want to help you all reach a decision that you can agree on. On rare occasions parents and the medical team still fail to agree. Prior to asking the Court to resolve matters, the hospital may have an ethics committee, which comprises of a range of independent medical and ethical experts and lay personnel. Their role is to review your child’s care options and make recommendations.

I would like to take my child on holiday but I’m worried that we won’t be able to find travel insurance to cover us.

Organising a holiday for you and your family can be really exciting and something for the whole family to look forward to. However, we know that when your child has a complex health condition, arranging travel insurance can often feel overwhelming and very confusing.

Free Spirit (a specialist travel insurance provider) have developed some useful tips for you to think about when arranging your specialist travel insurance so you are better equipped to find the right cover for you and your family. Please click here for further information: Free Spirit.

I feel like I’m constantly caring for my child. I think I really need a break from it all. Is there help out there?

If your child has been diagnosed with a life-limiting or life-threatening condition, social services have a statutory responsibility to assess your needs and provide you with short breaks and care in the home as necessary. If you are the main carer, you also have the right to a carer’s assessment through social services. This assessment should result in tailor made solutions, including the provision of short breaks, to meet your need.

Many organisations provide ‘short breaks’, also sometimes known as ‘respite care’. These breaks can be for a few hours, or days, depending on what you need and what is available. Some of these will provide carers to come to your house and look after your child while you do things around the house, or go out for a while. The carers will always be fully trained and qualified to look after your child, so you can leave knowing they are in safe hands.

Other organisations, like children’s hospices, can provide residential short breaks where your child, or even the whole family, can go stay for a while and have your child looked after while you take a break from caring and relax. You might want to stay as well and just rest, or you might want to go away for a few days and spend quality time with your partner and/or other children. These organisations will not only take care of the medical side of your child’s needs, but will run activities and keep them entertained and stimulated throughout their stay.

Residential short breaks will also cater for siblings, enabling them to have fun and receive support in their own right.

What do children’s hospices do?

Children’s hospice services provide care and support for children and young people with life-limiting conditions and their families throughout a child’s life. Delivered by a multi-disciplinary team and in partnership with other agencies, children’s hospice services take a holistic approach to care, aiming to meet the needs of both child and family – physical, emotional, social and spiritual – through a range of services.

These include:

  • support for the entire family (including siblings, grandparents and the extended family)
  • 24 hour end of life care
  • bereavement support
  • 24 hour access to emergency care
  • specialist short break care
  • 24 hour telephone support
  • practical help, advice and information
  • provision of specialist therapies, including physiotherapy, play and music therapy
  • provision of information, support, education and training to carers, where needed

Children’s hospice services deliver this care in the home (commonly termed ‘hospice at home service’) or in a purpose built building.

To see if you are eligible to receive support from your local hospice, phone them and ask to speak to the care team. They will then work with your child’s consultant to see if they can help you.