Healthcare through transition and beyond
Transition in healthcare
There are many changes that take place in healthcare as adulthood approaches. These are likely to include:
- Different people responsible for care. Children’s and adult’s medical services tend to be quite separate. Usually only GP services work with patients across all ages.
- Health teams structured in a different way. The way professionals work together may be very different.
- Less coordination among professionals. There is no equivalent of paediatric services to provide a link between health teams, therapy teams and social care.
- Professionals’ roles may be different in adult services. Titles may change, or the same title may carry different responsibilities. Sometimes there may be no equivalent adult service.
- Doctor-patient relationship changes. Without guardianship or power of attorney, parents have no right to be involved in decisions around health and welfare needs. Medical staff can’t break a patient’s confidentiality to share details of treatment or medication. This applies even in emergency situations.
- Support services, such as respite, may be increasingly hard to get.
If someone is likely to have ongoing healthcare needs, it’s really important for these to be part of the transition plan so the right adult service is in place when the children’s service comes to an end.
The school, or whoever is coordinating the transition planning process, should make sure all appropriate healthcare professionals are invited to take part and their input included. You can ask for particular services or therapies to be represented. However it can be difficult to coordinate meetings so that everyone can attend.
Welfare guardianship or Power of Attorney
Legal powers to manage a young person’s finances do not allow you to make decisions on their behalf about health, medication or treatment. If you think this is likely to be needed make sure you have applied for welfare powers too, or speak to your solicitor about adding these as soon as possible.
Be clear about powers you have been granted so you can explain them if necessary. These vary depending on the person’s needs, so professionals may not fully understand what powers you have been given and what this means in practice.
If your young person is willing, it can be helpful to print a letter, which they sign, stating they want you to take part in meetings and discussions with them. While this has no legal force, it makes their wishes clear and these should be respected wherever possible.
Health passports
These can be hugely helpful as part of planning, and to share among professionals to make sure everyone has access to essential information about the young person and their needs.
Passports can include medical information, how the young person communicates, any wishes they have been able to express, and anything else that helps someone understand and support them more effectively.
They can be written by friends and family, or created digitally and shared electronically. You can find more information about creating a digital passport online, or download tips and templates to help decide what to include.
Transition care plans
Many different care plans are in use in Scotland to coordinate transitions between services.
Two you may come across are the transition care plan or TCP, which is used to help young people receiving support from CAMHS to transfer to adult mental health services, and Ready Steady Go, which is recommended where a young person has a chronic or long term health condition. Others may be used in your area.
If your young person will continue to need physical or mental health services into adulthood, speak to the professionals involved in their care to find out how this will be handled.
Whatever the process, healthcare professionals – like everyone else – have a duty to put the young person’s wellbeing at the centre of the transition process, and to collaborate with other professionals who support them, to ensure relevant information is shared and plans work together as far as possible.
Anxiety and mental health
Anxiety, depression and related conditions are common in young people with disabilities, and it can be difficult to find effective treatment.
Your GP should be able to discuss medication or make a referral to mental health services, but they will need your young person’s permission to include you in their discussions unless you have guardianship or power of attorney for health and welfare.
Some young people find talking therapies such as cognitive behavioural therapy (CBT) beneficial. Others find it totally unhelpful, or that the length of time it’s offered for is far too short.
There are private counsellors and psychotherapists across Scotland, some of whom are experienced in working with people with disabilities of various kinds. You can search the Counselling Directory Scotland to find a practitioner near you. However being listed doesn’t necessarily mean someone has the right skills or experience, so you need to use your own judgement or ask for recommendations to choose the best person for you.
