Children s Long Term Ventilation Service Information for families

Transcription

1 Children s Long Term Ventilation Service Information for families

2 Hospital to Home Contents What is long term ventilation? 3 What is the Children s Long Term Ventilation Service? 3 What will the team provide? 4 Clinical support 4 Education 4 Comprehensive discharge planning 4 What is the Hospital to Home Service? 5 Sharing information 6 Frequently asked questions 7 Contact details 7 PALS information 7 2

3 Children s LTV Service information for families What is long term ventilation? For many different reasons young babies and children may need a machine (a ventilator) to help them breathe. Children on long term ventilation, or LTV for short, are those who need the breathing machine for many months or years. Some children use the machine with a face mask, but for others, the machine has to be attached to a plastic tube (a tracheostomy) that is surgically inserted into the windpipe. For these children the journey from hospital to home is particularly complicated and challenging. If your child needs this type of tracheostomy ventilation then you may meet someone from the Children s Long Term Ventilation Service. What is the Children s Long Term Ventilation Service? The Children s LTV Service is a multiprofessional team of healthcare professionals and support staff based at Royal Brompton Hospital in Chelsea, London. The LTV team delivers a regional outreach programme that includes (1) specialist clinical advice, (2) education and training and (3) comprehensive discharge planning to patients, families and professionals throughout London and the South East region. We have many more referrals to our service than would be possible if we only worked on a single site, and that allows us to build up experience in this rare condition and to share our expertise with other professionals within the London and South East network. Our aim is to work collaboratively with the team around your child, whether that team is in the hospital or community care setting, in order to support a safe and timely transition from hospital to home. Although the professionals directly caring for your child will always be responsible for the important decisions in day-to-day care, we are uniquely placed to provide continuity when you move from one centre to another, and can act as a central source of information to ensure that the individual needs of your child are appropriately communicated and understood. 3

4 Hospital to Home What will the team provide? Clinical support The LTV Service provides specialist advice and support to colleagues who work in paediatric or neonatal centres, as well as to those who work in local hospitals or in a community care setting. We work closely with your local healthcare team to share experience and best practice, and to discuss any clinical issues that may arise. We can provide important continuity if your child moves between centres. When you are ready to take your child home we will ensure that you have an individual care plan that includes advice on what to do if your child is unwell at home. Education It is important that you feel confident in caring for your child s healthcare needs. Your local lead nurse, or key worker, will be responsible for organising the bedside training that you require. This will include things like how to change the tracheostomy tube and 4

5 Children s LTV Service information for families how the ventilator works. We will give you a booklet that shows you all the skills you will be learning. Staff at the hospital will work through this training document with you, step by step, and will ensure that you have every opportunity to learn at your own pace. The LTV team can offer additional training support for you, or your family members, and can also provide education and training for a wide range of professionals working in both the hospital and community care settings. By rigorously training your community care providers before hospital discharge we aim to ensure that they have the chance to learn all the necessary skills and become an expert in the care of your child, and a valuable resource for you when you leave hospital. Comprehensive discharge planning We understand that when your child is attached to a ventilator the journey from hospital to home can seem very complicated and is an added stress for you and your family at an already difficult time. We will work closely with your local hospital key worker, or lead nurse, to support you and together we can ensure that all the important tasks are taken care of and that you can feel confident to take your child home. When your child is referred to our service, you will meet with a keyworker from the team. This person will keep you informed about all the planning that is necessary in the hospital and community to get your child home safely. We will always endeavour to act as an advocate for you and your child, and we can be a useful link between the hospital and the community services. Someone from our team will continue to offer support, even if your child transfers to a new hospital before going home. An important part of the hospital discharge is the multidisciplinary team (MDT) meeting, where you can be introduced to the key people involved in your child s care, from both the hospital and the community. During or after the meeting you will hear about the progress that has been made towards your child s discharge from hospital and the MDT can be a good opportunity for you to raise any concerns and ask any questions you may have. Some families prefer to have a private discussion with their lead nurse instead of attending the MDT meeting. We will ask you at an early stage how you would like to be involved with the MDT. In addition to healthcare professionals, it is vital that we work closely with professionals from other agencies or disciplines, such as commissioning, housing, social services or local authority, depending on the needs of the individual child and family. We want to ensure that we have the key experts working with us in these important areas and that care is joined up around you and your child. We find that collaborative working is the best way to find solutions when faced with delays in the discharge process. 5

6 Hospital to Home What is the Hospital to Home Service? The Children s LTV team work alongside the Hospital to Home Service, which is a national programme supporting LTV professionals and families to achieve a safe and timely hospital discharge. The aim of the service is to improve information sharing between hospital and community professionals involved in the care of children on LTV, and to provide a central online pathway with structure, documentation reports on key tasks, decisions and actions all aimed at making the discharge process safer and more efficient. The Hospital to Home service also provides integration between health and social care, and you will be offered the opportunity to meet a welfare advisor who can support you in ensuring that family wellbeing is not forgotten when you are busy learning how to get ready to take your child home. The welfare advisor can help to identify possible solutions to non-clinical issues that may be delaying discharge from hospital, for example, availability of suitable housing. The welfare advisor also helps families with other issues around housing grants, banding, maximising household income, and completing benefit application forms such as Disability Living Allowance. More information is available on the website (hospitaltohome.nhs.uk) and an additional information leaflet will be given to you with more details on this aspect of the service. Sharing information In order to deliver the best and safest care possible it is important that healthcare professionals record and share some important information about your child. For more information please see our leaflets Information for patients or How we protect your information, both of which are available on our website: hospitaltohome.nhs.uk in the section patients and families > communications > leaflets. 6

7 Children s LTV Service information for families FAQs Who can I contact outside of office hours? You will be given a contact name and number from our service and when your named discharge co-ordinator is not available someone from the office will be able to take a message, or help you with your enquiry. We do not provide an emergency or out-of -hours service. Will I get any help once my child is home? Yes, your continuing care team will usually offer a package of care to assist you in looking after your child s health needs at home. A nurse from the continuing care team will visit you and your child in hospital to carry out an assessment of your child s health needs. This will affect how many hours of care you will be offered. We are not able to influence decisions about how much care you receive. How will I carry all of my child s equipment? There is some essential equipment that will need to be with your child at all times, but this should not prevent you from going out with your child. Portable ventilators can often fit in the bottom of certain buggies. We can advise on which make of buggy is suitable for your child s needs and necessary equipment. I m finding it difficult to pay my bills. Is there any help available? There is financial support available. What you are entitled to will depend on your individual circumstances. The Hospital to Home welfare advisors will be able to inform you of what is available and support any applications you may choose to make. How can I meet other families with children on long term ventilation? We have worked with many families whose children have different reasons for needing a ventilator. We can help to put you in touch with other families who have experienced an LTV hospital to home journey. Please do not hesitate to ask your discharge co-ordinator about this if you feel it would be of help. 7

8 How to contact us Telephone: , extension 4411 Office hours: 8:30am-5pm, Monday to Friday For more information, please see our website: Children s Long Term Ventilation Service Royal Brompton & Harefield NHS Foundation Trust Sydney Street London SW3 6NP If you require this booklet in a different language, Braille or large font format, then please contact us on the above telephone number. Patient advice and liaison service (PALS) If you have concerns about any aspect of the service you have received from us and feel unable to talk to the people responsible for your child s care, call PALS on or pals@rbht.nhs.uk. This is a confidential service.