Your Journey

Transition to Adult Services FAQs

A panel of WellChild Transition Specialist Nurses and experienced parents answer questions parents often have about transitioning from children’s to adult’s services.

By Callum Campbell · Published: July 23, 2021

Transitioning to adult services can be a confusing and overwhelming period in your child’s journey. It can be difficult to know when to start the process, and navigating all the systems involved to get the right care for your child can be challenging.

In July 2021 we organised a virtual Q&A event to help answer some of the questions parents have about transition to adult services. You can watch a recording of the event above or here on YouTube >>

Using your questions, we have created the following Transition to Adult Services FAQs. We have also included some general points and tips provided by WellChild Nurses and experienced parents at the end of the article.

1. Where can I find the services I need to know about and information about support for adult life?

Our panel addressed this question during the event. Use this timestamp to watch their response >>

The first step is to talk to the professionals involved with your child’s care. This could be the social worker, specialist nurse, GP, or school nurse. With the help of professionals who look after your child you should start preparing for the move to adult services quite early, when your child is around 12 or 13 years old. An EHCP meeting can be a good time to raise transition and start planning.  You should ask questions at meetings like this if there is anything you are unsure about. It can be particularly good to ask questions if you want to learn more about specific services available to help your young person through transition.

Another great way to find the services you need to know about is online. You should start with your Local Authority’s Local Offer website. The Local Offer is designed to be a directory of services available to children and young people with SEND in your area. You should be able to find your Local Offer site by visiting your Local Authority’s website or searching online. The Local Offer sites usually have a section dedicated to transition to adult services, alongside information about social care, education and more.

There are lots of other organisations who also provide helpful information, including:

2. What are some of the common challenges faced by cognitively impaired persons as they transition to adulthood?

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It is important to note that the challenges vary between each young person depending on their needs, the area where they live and other contexts. Set aside some time to have a discussion as a family. Talk about what you think your challenges may be as your young person transitions to adult services. You can then talk about these potential challenges with the team that cares for your young person.

One of the most common challenges for cognitively impaired children and young people is consent and the possibility of legal issues arising as they move to adult services.

We have included a summary of some of the legal terms that you may come across as your child transitions to adult services.

Your young person will become financially responsible at the age 16 in the eyes of the law and you will be contacting by the Department For Work And Pensions (DWP). They will send a representative in person or carry out a remote assessment to determine whether your young person has capacity to receive their benefits directly. The DWP representative will ask your young person if they approve their parents to manage their benefits. If your child is unable to communicate this, they will allow you to continue to manage your young person’s benefits on their behalf. They do other research to make sure, like looking at letters you have from health care professionals or speaking to your child’s lead consultant. The assessment should allow for your young person’s benefits to be deposited in an account in your name rather than theirs.

The DWP assessment is not a Mental Capacity Assessment (MCA), but it is similar. Your young person may have a MCA for other services, for example continuing care and schools tend to carry these out once a young person turns 18.

Deputyships

You might hear people talk about “power of attorney” or “deputyship” as your young person approaches the age of 16. The phrase “power of attorney” is not used anymore, but deputyships do still exist.

Deputyship is separated into two areas: “financial deputyship” and “care and support deputyship”. If you are considering either of these, you should take advice from your social worker or a legal firm, most of whom offer some free advice initially.

Generally speaking, as long as your child doesn’t hold significant amounts of property or vast amounts of money, there is no need for you to get financial deputyship. Appointeeship should be enough for you to manage their benefits and money in the future. If your child does have significant assets and you are advised to get a financial deputyship, it should be noted that applying for a financial deputyship is a chargeable service that can cost a lot of money.

There is often a fear that after a young person reaches 18 their parents will not be consulted by healthcare professionals with regards to their young person’s care. Regardless of whether you have a care and support deputyship or not, healthcare professionals will still involve you with care decisions. Best interest decisions will be made on behalf of a young person over the age of 18 who does not have mental capacity. Parents will still very much be a part of these decisions.

One of the most visible differences between children’s and adult health services for parents is that you may no longer be asked to sign consent forms. This is because it is not legal for parents to sign consent forms on the behalf of their young adult if they are over the age of 18. Having a Care and support deputyship does not change this. Many families find this change alarming, but all decisions about your young person’s care will be made with their best interests, with you and the whole team around them involved in discussions before a decision is taken.

Many parents decide that having a care and support deputyship is not necessary for them, but it is worth seeking advice from a law firm if you are unsure. Care and support deputyships are a chargeable service from a solicitor, but the charge can be refunded if you receive a care and support deputyship due to your young person having a lack of mental capacity. The process for obtaining a care and support deputyship can be stressful. Many parents say that the forms are particularly challenging. If you do decide to get a care and support deputyship it is recommended that you ask for support offered by organisations like Citizen’s Advice.

Your young adult may be entitled to legal aid as any means tests for legal aid will be made on their income, rather than yours as a parent. You can phone 0345 345 4345 to find out if you can get legal support called Civil Legal Advice (CLA) or visit the Government website >>

3. What is the provision for severely disabled complex medical needs young adults who do not resemble an adult in any way, other than their date of birth? It seems that they are just shoe-horned into an adult service or hospital ward when this is not appropriate for them.

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With advances in medical technology, care, and life expectancy, many young people with complex health needs are becoming what is sometimes described as an “adult child”. As time goes on, the NHS cannot keep these young people in children’s hospitals, as they would quickly run out of capacity. So there has to be a plan to transition these young people to adult services.

The NHS is carrying out work behind the scenes to make these transitions possible. There are national transition nurses, who are contacting local hospitals to make sure that they are meeting young people’s needs. There is also lots of work on a local level to make sure NHS adult services are ready to receive these young people. Most trusts now have learning disability nurses in both paediatric and adult services. These nurses can make sure adult services meet the needs of these young people when they move by ensuring that reasonable adjustments are made.

Before your child reaches 18 you can ask your paediatric hospital who their learning disabilities nurse is, if you can speak to them about transition to adult services, and what adjustments will need to be made. You can also ask if they will fill in a hospital passport or “all about me” for your young person. These passports can be really important, especially on your young person’s first few stays on an adult ward. They are designed so staff can read all the information they need about your young person, learn what their needs are and make sure they are met. They often also contain a list of all the specialists involved in your young person’s care, which can be valuable if they are admitted to a ward where none of the team have met them before.

You can also ask if you can visit the adult wards and meet the teams before transition. You can even talk about the specific needs your young person has on these visits. For example, if you know your young person will need a smaller size of equipment than is usually available to adults, tell your professionals this so they can get things ready. Visiting the A&E where your young person could be admitted can be helpful too, especially if the A&E is not at your usual hospital.

You can ask the team who work with your child in paediatrics to arrange a transition multidisciplinary team meeting to discuss the plan for your young person. Preparation work like this before your child reaches 18 is key, and helps to make sure adult services are prepared to meet the needs of your young person.

“We have done quite a lot of work with our adult and acute teams to make sure that things are right for these young people on the wards, and that parents can still stay with them and make sure that we are meeting their needs. We have matrons for young people with complex needs who manage this. I am aware that this is happening nationally too.”

Janice, WellChild Specialist Practitioner (Transition Nurse for Complex Needs and Long Term Ventilation) at Manchester University NHS Foundation Trust

An example of what is happening in Manchester more broadly to aid transition of young people with complex needs to adult services

Janice WellChild Specialist Practitioner (Transition Nurse for Complex Needs and Long Term Ventilation) at Manchester University NHS Foundation Trust

Adult services do need to make reasonable adjustments for your young person. This may include allowing parents to visit more regularly and staying on the ward if you need to. Many of the adjustments that need to be made for your young person will also help the staff in adult services care for your child better, and they should be willing to put them in place. However, in cases where the adjustments are not being put in place you should escalate. You can do this by speaking to the nurse in charge of your young person’s care or getting in touch with your local Patient Advice and Liaison Service (PALs). Find your local PALs on the NHS website >>

Parents often worry about their young person being treated on an adult ward, but there are aspects of adult services that will work better for many young people than the paediatric services that looked after them previously. Overall, whilst it might be a tricky period as your young person transitions from children’s to adult services, once you get to know the teams involved in your young person’s care it will get easier.

4. My son is 18 in less than a month. As yet, we have had no transition to adult services. I totally understand that Covid had complicated matters, but what can be done as of now to ensure my son gets the support he needs?

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This is a pertinent question, as the pandemic has disrupted many routine NHS services and pushed back the transition of some young people with complex needs. Professionals within the NHS and Local Authorities recognise that there have been delays because of Covid-19, and even though there have been set backs, your young person’s transition to adult services should still happen properly.

The first step is to speak to with the professional you see the most, who has the most input with your young person currently. This might be a key worker in education, for example a SEND officer, or a social worker. Ask them for advice, and talk about what things might look like for your young person after transition. Think about what your most urgent concern is, and focus on that to begin with. Your most urgent concern might be gaps you can see coming up in education, social care, or health care.

If you have an EHCP plan, the local authority has to make a statutory decision about what provision they are going to put in place for your young person. They may already have a plan in mind, but have not informed you about it yet. It is important to ask people in multidisciplinary teams who is doing what, and what the plan is, to make sure there is no breakdown in communication. You should feel empowered to ask questions whenever you have them.

As this question was from a parent based in Cumbria, we were able to advise that local service Inspira could be helpful.

5. At the moment our child has some local support. When they turn 18 shared care between our local and tertiary hospital will stop, so if our child ends up in our local hospital in an emergency no one will know my child or their needs. We lose our local children’s community nurses, and the adult district nurses won’t take them on unless she is bed bound. Our GP says they are too complex for him to manage, so he can’t be our local point of call. We are so confused as just because when they turn 18 it doesn’t mean their needs change. Can you give any information/advice on what we could do please?

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Ask whoever is primarily looking after your young person in paediatric services what their plans for your young person’s transition are. Often there is not a service in adults that is exactly as it is in paediatrics. For example, a community paediatrician will usually hand over to your GP rather than to any specialist services. Your GP has a statutory duty to take your young person on as a patient and they cannot refuse them. Often GPs should take on a key worker role for your young person after they have transitioned, and they certainly cannot refuse to take your child on as a patient because they are too complex.

If your child has a learning disability, their GP is supposed to see them for an annual review from the age of 14. You should ask your GP to carry out these reviews when your child reaches 14, as even though GPs must carry out these reviews, they may not offer them to you unless they are prompted. These reviews can be helpful for your GP as they get to know your young person and become familiar with their needs before transition to adult services. It will help the GP get ready to receive your young person when they turn 18. It also has the added benefit of allowing you as parents to build a new relationship with the GP. Find out more about the learning disability annual review on the Mencap website >>

Children’s community nurses will often refer on to adult district nurses if your young person has an equipment need. Adult district nurses work differently to community nurses, and carry out what is called “episodes of care”. Sometimes this means that they will not provide care to your young person all of the time. You should ask your children’s community nurses what will happen to your young person’s equipment provision? It is their responsibility to ensure that they provide an ongoing service, which could be delivered by a number of professionals, including district nurses, your GP, or a community matron. As mentioned in the answers to other questions, you may also wish to ask professionals to organise a multidisciplinary team meeting, so you can ask who is going to take on your young person’s adult provision. If there are any gaps here, you can go back to your young person’s practitioners and talk about how gaps in their provision can be filled.

6. Should transition to adult services take place for those children who are under palliative services or considered end of life?

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Generally, it is advisable to carry out parallel planning. This means doing most of what you would do if the young person was going to transition to adult services, including speaking with the young person’s lead professional and identifying what gaps in provision there may be for the young person in adult services. It might be useful to plan for transition in case there are more local adult services who are better placed to support your young person, particularly if most of the children’s palliative services available are in a bigger hospital far from the family home. It is also possible that the young person may stabilise and need to access adult services after their 18th birthday.  However, if a young person is rapidly approaching end of life, the team may decide to stop planning for transition to adult services and keep them in paediatrics. This decision will likely be led by consultants and would be made on a case by case basis.

7. We need help finding a placement for transition from school as there isn’t anything suitable in our area my son, who is 18 soon.

This is often the case for children with complex needs, and many parents find that they need to widen their search. If you haven’t already, start by looking at your Local Offer website. Then start asking around, particularly at your young person’s current school, as the staff will often know of other young people who have been in a similar situation in the past. Other parents are often a great source of knowledge, and it might be worth connecting through support groups like the Family Tree to find out about the sorts of placements they have found.

Your EHCP case officer can also give you some advice, although it won’t necessarily be impartial. It is worth getting in touch with your local SENDIAS, who are more independent, and may be the best organisation to contact. Find out how to access your local SENDIAS on the Council For Disabled Children website >>

The setting your child needs might be out of your area. However, you have the right to choose and to apply for a place in a suitable education centre, regardless of where that centre is. The Local Authority may not want your young person to attend an education centre outside of the area as it may cost them more. However, they must allow your young person to attend a centre outside of the area if there is nothing suitable for them in their Local Authority.

This question was originally from Tracy in Derby. Nina, who is the WellChild Transition Nurse at University Hospitals of Derby and Burton NHS Foundation Trust, suggested that you contact Preparing for Adulthood Social Workers and local organisations like SENDIAS, and Umbrella.

8. I have been told that my daughter is better off transitioning early. She’s just 16. She has a combined health and social care funding package. Is that true?

Every young person is different, and sometimes transitioning early is suitable. If your young person is ready, and the services are there, then they might be better off in adult services. There may be services available to them in adults that they would not have been able to access in paediatrics.

Many parents worry about transitioning to adult services as there is a fear that provision will not be as good as it was in paediatrics. However, often adult services may be more suitable for a young person, depending on their situation. Please also bear in mind that adult services must make reasonable adjustments for your young person.

9. How can we ensure that children are not missed by social services and therefore have a terrible transition to adulthood? My son had a statement and a recognised disability diagnosis but nothing was triggered to tell me that the minute he turned 18 everything would be thrown into chaos for him and us. It seemed he just got forgotten about? Do I live on the ‘wrong street’?

Although you should have a referral on to adult social care before your young person reaches 18, this does not always happen. It is important to note that the criteria for receiving adult social care is different to the criteria for children’s social care. If you can prove your young person has Care Act eligibility, they should be entitled to social care. You can then look into getting a Continuing Care Assessment and/or an adult social care assessment. To make a start, speak to professionals in children’s social care team or your child’s school for advice, before they reach 18 if you can.

There is also, unfortunately, a postcode lottery when it comes to receiving adult social care. Your local authority will have an adult social services website, where you can find out more information about what is available in your area.

General advice for transition to adult services

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  • Start to think about it early, when your child is aged 12 to 14. Consider the big things: do you want your child to access a residential collage? Does their education centre need to be close to home? How much independence do you see them having? These questions can take time to answer, because they are often dependent on what support will be available to your young person as they reach adulthood.
  • Do not be scared of allowing your young person to be independent, but remember that independence might look different for your young person. Independence does not always mean your young person being able to go out completely on their own, or do the sorts of things you did when you were their age. It looks different for every young person with complex needs, and it may take some time to consider what will work for your young person.
  • Transition can be daunting because it feels like you are planning your child’s life into old age. This is not the case. You are only planning for what happens after your young person reaches the age of 16 and before the age of 25. The decisions you make are important, but they will not be for life. The most important things for young people during this time are often education, health, respite and care provision. These four areas can be a good place to start planning, as you consider what will these look like during these years for your young person.
  • Start your research by asking questions. Talk to the professionals around your child about what might be available. Ask them what their plans for transition are, and ask them to arrange a multidisciplinary team meeting about transition if they are not planning to do so already. Peer to peer support forums, like the WellChild Family Tree, are a great source of information and allow you to ask other parents about their experiences. You can also look at the organisations who provide information, listed under question 1.
  • Adult services tend to operate on a different framework to children’s services and have different criteria. For example, you may need a continuing care assessment for adult continuing care services. They operate on a different framework when compared to children’s continuing care services, which will be different from what you are used to. Finances, respite care, and social care are all different for adults. You should research what you can and ask professionals and other parents, to find out what your young person will be able to access in adult services. Sometimes your young person will be able to access something in adult’s services that they were not able to access in children’s services. Sometimes the opposite is true, and often what your young person will or will not be able to access will come down to their specific situation.
  • Try to be proactive rather than reactive, whilst accepting that there will be things that you learn as you go on. “Don’t be scared to ask for what you think is best for your young person, because the professionals will usually take that into account” Craig
  • Find a key worker. This can be any professional you have a relationship with, for example a nurse, social worker, SEND officer, GP. Ask them if they will help as early as possible. Tell this lead professional, or any professionals that work with your child, that you want them to write down your plans for transition, so you can keep track of your young person’s needs and make sure there are no gaps.
  • Things are getting better. We have been involved in NHS strategy and the uniformity of services from child to adult has been identified as something that needs to be addressed. Transition to adult services has been included as one of the four key areas for children and young people in the NHS Long Term plan. Complex care matrons and nurses for adults are new and this area of expertise is growing. The person who takes on the key worker/clinical responsibility role may well still be the GP in adulthood, but they need to be trained, upskilled, and given more autonomy. We are raising these sorts of concerns with NHSE, with WellChild Transition Specialist Nurses prominent in these discussions.

A WellChild Transition Nurse can help if there is one posted in your area. Have a look on the WellChild website to find out where our Transition Specialist Nurses are in the UK, and get in touch for more information.

Janice Fauset-Jones – WellChild Specialist Practitioner (Transition Nurse for Complex Needs and Long Term Ventilation) at Manchester University NHS Foundation Trust. Janice’s role is to act as a clinical leader and resource and provide specialist expertise, advice, information and knowledge to support and facilitate the transition process for young people with complex needs and long term ventilation.

Nina Heighington – WellChild transition nurse at University hospitals of Derby and Burton NHS Foundation Trust. Nina is working to improve the pathways and patient experience of all young people who are moving from the children’s services to the adult services in hospital.

Craig Hatch – WellChild Trustee and Parent Ambassador. With four children, including Fraser who has Cerebral Palsy and a large amount of daily care needs, Craig has first-hand experience of the challenges facing families caring for a child with complex health needs. As a WellChild Parent Ambassador, Craig has spoken about his experiences at a number of conferences, events and was part of the team that spearheaded the #notanurse_but campaign, shining a light on the reality of life behind closed doors for thousands of families.

Chaired by Tara Parker, WellChild Director of Programmes. Tara is a registered paediatric nurse with extensive experience across the UK. Her career in paediatrics has spanned both acute and community sectors and she has held senior positions within Clinical Commissioning Groups (CCGs) and NHS Acute and Community Trusts. Tara is mother to two children, one of whom who has complex needs and this has enabled her to gain a unique insight to both the lived experience and the professional challenges.

Information in this article is relevant to England.

Callum Campbell, callumcampbell@wellchild.org.uk

First published 26 July 2021

Next review due November 2021