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.

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.

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.

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 for example 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 for example 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 (PDF).

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.

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.

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.