Paediatric Inherited Metabolic Diseases (IMD) Team

Transcription

1 Paediatric Inherited Metabolic Diseases (IMD) Team

2 Contents 3 Welcome to your Paediatric Inherited Metabolic (IMD) team 4 Who is in the team and how can they help? 4 Consultants and administration team 5 Nursing team 6 Dietetic team 6 Appointment centre 7 Savannah ward 7 Travelling to the hospital 8 Who do I call if my child is unwell or I am concerned about my child? 8 Who do I call if my child is unwell or if I am concerned about my child and they have a specialist metabolic diet? 9 Can I claim for travel? 10 Charities and fundraising 11 Contact us 12 Map 2

3 Welcome to the Paediatric Inherited Metabolic Diseases team This leaflet explains the roles of the key people involved in your child s care. It also explains who the key people are, and how you can contact them. If your child has been diagnosed with a metabolic condition they will be allocated to one of our paediatric metabolic consultants. The paediatric metabolic team consists of many different staff all with different roles. We can all help you in different ways and are happy to be called for support and advice if you need it. You can contact us Monday-Friday between the hours of 9am-5pm (excluding bank holidays), see contact details opposite. For urgent enquiries out of hours please call switchboard: ask for on-call paediatric registrar covering metabolic who will be able to liaise with the on-call consultant about your child s care. If your child is unwell and you are concerned and cannot speak with someone from the team immediately then please seek further medical advice from your GP or Accident and Emergency. 3

4 Who is in the team and how can they help? Consultants Dr Champion Dr Mundy Dr Vara Dr Lemonde Your consultants are specialists in metabolic medicine and will be the main doctor in charge of your child s metabolic care. They will manage your child s care until discharge or transition into the adult services when they reach 16. You will see the consultant at regular clinic appointments either at the Evelina London Children s Hospital or in one of our clinics in the community. If your child becomes unwell and requires hospital admission to your local hospital, the metabolic consultant on call will be informed and will support the management of your child s care. Please also call us to inform us of your child s admission. Administration team Secretary to Dr Champion, Dr Mundy and Dr Vara. T: Secretary to Dr Lemonde and Adult Metabolic Consultants. T: The administration team support the consultants and can be contacted about: Obtaining a copy of a clinic letter if you have lost it or not yet received it 4

5 If you need to follow up any non-dietetic blood results If you have a query about an appointment which cannot be resolved via the Appointment Centre E:PaediatricAppointmentsMetabolic@gstt.nhs. uk T: If you need to update any of your personal details, e.g. address, GP or contact no. Nursing Team T: Your clinical nurse specialist (CNS) team can help you in managing and understanding your child s condition and any logistical issues you have. They can advise you on what to do if your child is unwell at home, give telephone advice and liaise with your local hospital if needed. If necessary they can contact your child s nursery or school before they are due to start to inform them of your child s metabolic condition and any particular management that they may need, for example special diet or what to do if your child becomes unwell. Your nurses can help with: Advice during illness and support with Emergency Regime. Condition management at nursery or school Accessing financial support Social, emotional and community support Medication doses and supplies Going on holiday with medication Referrals to local services, including community nursing teams. 5

6 Dietetic Team T: Your specialist dietetic team can help you manage your child s metabolic diet. They can also assist you with any issues you have with dietary products and supplements. They are available to help manage your child s metabolic diet and supplements during times of illness. Your dietitian can help with: Specialist Emergency Regime during illness (which interim recipes to use and when) Specialist weaning advice (specialised restricted metabolic diets) Specialist prescription foods/ supplements Blood spot results Blood spot testing equipment. Letters for going on holiday with feeds and emergency regimes. Appointment Centre E: PaediatricAppointmentsMetabolic@gstt.nhs.uk T: We have a dedicated team that manage our outpatient appointments. Letters are usually sent out to you six weeks prior to your appointment date. Please contact the appointments team if: You are unable to attend the appointment If you would like to reschedule If you notice any errors with your appointment. 6

7 Savannah Ward T: If your child requires admission to hospital they are likely to be admitted to Savannah Ward. The admission can be planned (elective) or may be as an emergency transfer from your local hospital to Savannah Ward. This ward cares for children with both Neurology and Metabolic conditions and is located on the 4 th floor. Please do not come directly to Evelina A&E unless you have been advised to. You will need to present to your local hospital in the first instance. If an elective admission is required you will be contacted by our Metabolic Admissions Co-ordinator and further details of the ward will then be provided to you. Please note: Only one parent can stay on the ward overnight No siblings to stay on the ward overnight Food is provided for patients and breastfeeding mothers only. Travelling to hospital There are different ways that you could travel to the hospital. Please visit the Evelina London website for further information. Please note: the hospital is within the congestion charging zone. Parking is available at the hospital however is limited and costly. There are a limited 7

8 number of allocated disabled bays for parking with an authorised Blue Badge. You will need to show an appointment letter in order to be able to park in these bays. Who do I call if my child is unwell or I am concerned about my child? Within the hours of 9am-5pm Monday- Friday please call the Clinical Nurse Specialists if your child is unwell. They can advise you on how to manage your child s illness. Outside of these hours please contact the Paediatric Metabolic Registrar on call via switch board T: Who do I call if my child is unwell or if I am concerned about my child and they have a specialist metabolic diet? Within the hours of 9am-5pm Monday- Friday please call the Metabolic Dietitians if your child has a metabolic condition that requires a specialist emergency regime; Interim Regime and requires changes to specific diets during illness (i.e MSUD, Organic Acidaemias) Outside of these hours please contact the Paediatric Metabolic Registrar on call via switch board T:

9 Can I claim for my travel? Some patients are entitled to claim partial or full reimbursement of travel costs to and from hospital if they are in receipt of one of the following qualifying benefits and allowances: Income Support Income Based Employment and Support Allowance Income Based Job Seekers Allowance Working Tax Credit and Child Tax Credit. If you have any queries please call or follow the link px St Thomas Cashiers Office: Cash Office opening hours Day of Week Morning Afternoon Monday Thursday 9.30 to to Friday 9.30 to to

10 Evelina London Children s Hospital Evelina London Children's Healthcare is part of Guy's and St Thomas' NHS Foundation Trust. We are the second largest provider of children's services in London. Fundraising and charities: Evelina London Children s Hospital Charity: Thanks to generous donations we are able to continue making Evelina London a special place for children. Follow us on Climb: Supporting families affected by Inherited Metabolic Diseases. You can contact climb for many reasons including Family contact services Family advice services Information services Fundraising support Conferences, workshops and education days 10

11 Contact us Evelina London Medicines Helpline If you have any questions or concerns about your child s medicines, please speak to the staff caring for them or contact our helpline. t: am to 5pm, Monday to Friday e: letstalkmedicines@gstt.nhs.uk Your comments and concerns For advice, support or to raise a concern, contact our Patient Advice and Liaison Service (PALS). To make a complaint, contact the complaints department. t: (PALS) e: pals@gstt.nhs.uk t: (complaints) e: complaints2@gstt.nhs.uk Language and accessible support services If you need an interpreter or information about your care in a different language or format, please get in touch: t: e: languagesupport@gstt.nhs.uk NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health. w: Leaflet number: 4411/VER1 Date published: May 2017 Review date: May Guy s and St Thomas NHS Foundation Trust 11

12 12