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Paediatric Inherited Metabolic Diseases (IMD) Team
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Page 1: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

   

 

Paediatric Inherited Metabolic Diseases (IMD) Team

12 

Page 2: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Contact us Contents

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.

3 Welcome to your Paediatric Inherited Metabolic (IMD) team

4 Who is in the team and how can they help? t: 020 7188 3003 10am to 5pm, Monday to Friday e: [email protected] 4 Consultants and administration team

5 Nursing team 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.

6 Dietetic team

6 Appointment centre t: 020 7188 8801 (PALS) e: [email protected]

7 Savannah ward t: 020 7188 3514 (complaints) e: [email protected]

7 Travelling to the hospital 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: 020 7188 8815 e: [email protected]

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?

NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health.

9 Can I claim for travel?

w: www.nhs.uk 10 Charities and fundraising

11 Contact us 12 Map

11 

Leaflet number: 4411/VER1 Date published: May 2017

Review date: May 2020 © 2017 Guy’s and St Thomas’ NHS Foundation Trust

Page 3: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Evelina London Children’s Hospital Welcome to the Paediatric Inherited Metabolic Diseases team

www.evelinalondon.nhs.ukEvelina London Children's Healthcare is part of Guy's and St Thomas' NHS Foundation Trust.

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.

We are the second largest provider of children's services in London.

If your child has been diagnosed with a metabolic condition they will be allocated to one of our paediatric metabolic consultants.

Fundraising and charities:

The paediatric metabolic team consists of many different staff all with different roles.

Evelina London Children’s Hospital Charity: www.supportevelina.org.uk

Thanks to generous donations we are able to continue making Evelina London a special place for children. We can all help you in different ways and are happy to

be called for support and advice if you need it. Follow us on Twitter: @SupportEvelina 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: 020 7188 7188 ask for “on-call paediatric registrar covering metabolic” who will be able to liaise with the on-call consultant about your child’s care.

Climb: www.climb.org.uk Supporting families affected by Inherited Metabolic Diseases. You can contact climb for many reasons including

• Family contact services • Family advice services • Information services 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.

• Fundraising support • Conferences, workshops and education days

 

10  3 

Page 4: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Who is in the team and how can they help?

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:

Consultants Dr Champion Dr Mundy Dr Vara • Income Support Dr Lemonde • Income Based Employment and Support

Allowance 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.

• Income Based Job Seekers Allowance • Working Tax Credit and Child Tax Credit.

If you have any queries please call or follow the link http://gti/services/finance/forpatients/travelcosts.aspx St Thomas Cashiers Office: 020 7188 2328

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.

Cash Office opening hours Day of Week Morning Afternoon Monday – Thursday 9.30 to 14.00 14.30 to 16.30 Friday 9.30 to 14.00 14.30 to 16.15   

Administration team

 Secretary to Dr Champion, Dr Mundy and Dr Vara.

 T: 020 7188 0848

 Secretary to Dr Lemonde and Adult Metabolic Consultants. T: 0207 188 4004

  

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  9 

Page 5: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

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.

• 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:[email protected] T: 020 7188 4000

Who do I call if my child is unwell or I am concerned about my child? • If you need to update any of your personal details,

e.g. address, GP or contact no.

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.

Nursing Team T: 020 7188 0855 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.

Outside of these hours please contact the Paediatric Metabolic Registrar on call via switch board T: 020 7188 7188 Who do I call if my child is unwell or if I am concerned about my child and they have a specialist metabolic diet?

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.

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)

Your nurses can help with:

• Advice during illness and support with ‘Emergency Regime’.

• Condition management at nursery or school • Accessing financial support Outside of these hours please contact the Paediatric Metabolic Registrar on call via switch board T: 020 7188 7188

• Social, emotional and community support • Medication doses and supplies • Going on holiday with medication

• Referrals to local services, including community nursing teams.

8  5 

Page 6: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Savannah Ward Dietetic Team T: 020 7188 8848 T: 020 7188 4008

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.

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 4th floor.

They are available to help manage your child’s metabolic diet and supplements during times of illness. Your dietitian can help with: 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.

• Specialist ‘Emergency Regime’ during illness (which interim recipes to use and when)

• Specialist weaning advice (specialised restricted metabolic diets)

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.

• Specialist prescription foods/ supplements • Blood spot results

Please note: • Blood spot testing equipment. • Only one parent can stay on the ward overnight • Letters for going on holiday with feeds and

emergency regimes. • No siblings to stay on the ward overnight • Food is provided for patients and breastfeeding

mothers only. Appointment Centre E: [email protected] T: 020 7188 4000

Travelling to hospital We have a dedicated team that manage our outpatient appointments. Letters are usually sent out to you six weeks prior to your appointment date.

There are different ways that you could travel to the hospital. Please visit the Evelina London website for further information. http://www.evelinalondon.nhs.uk/parents-and-visitors/getting-here/directions.aspx

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.

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

6  7 

Page 7: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Savannah Ward Dietetic Team T: 020 7188 8848 T: 020 7188 4008

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.

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 4th floor.

They are available to help manage your child’s metabolic diet and supplements during times of illness. Your dietitian can help with: 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.

• Specialist ‘Emergency Regime’ during illness (which interim recipes to use and when)

• Specialist weaning advice (specialised restricted metabolic diets)

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.

• Specialist prescription foods/ supplements • Blood spot results

Please note: • Blood spot testing equipment. • Only one parent can stay on the ward overnight • Letters for going on holiday with feeds and

emergency regimes. • No siblings to stay on the ward overnight • Food is provided for patients and breastfeeding

mothers only. Appointment Centre E: [email protected] T: 020 7188 4000

Travelling to hospital We have a dedicated team that manage our outpatient appointments. Letters are usually sent out to you six weeks prior to your appointment date.

There are different ways that you could travel to the hospital. Please visit the Evelina London website for further information. http://www.evelinalondon.nhs.uk/parents-and-visitors/getting-here/directions.aspx

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.

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

6  7 

Page 8: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

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.

• 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:[email protected] T: 020 7188 4000

Who do I call if my child is unwell or I am concerned about my child? • If you need to update any of your personal details,

e.g. address, GP or contact no.

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.

Nursing Team T: 020 7188 0855 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.

Outside of these hours please contact the Paediatric Metabolic Registrar on call via switch board T: 020 7188 7188 Who do I call if my child is unwell or if I am concerned about my child and they have a specialist metabolic diet?

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.

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)

Your nurses can help with:

• Advice during illness and support with ‘Emergency Regime’.

• Condition management at nursery or school • Accessing financial support Outside of these hours please contact the Paediatric Metabolic Registrar on call via switch board T: 020 7188 7188

• Social, emotional and community support • Medication doses and supplies • Going on holiday with medication

• Referrals to local services, including community nursing teams.

8  5 

Page 9: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Who is in the team and how can they help?

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:

Consultants Dr Champion Dr Mundy Dr Vara • Income Support Dr Lemonde • Income Based Employment and Support

Allowance 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.

• Income Based Job Seekers Allowance • Working Tax Credit and Child Tax Credit.

If you have any queries please call or follow the link http://gti/services/finance/forpatients/travelcosts.aspx St Thomas Cashiers Office: 020 7188 2328

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.

Cash Office opening hours Day of Week Morning Afternoon Monday – Thursday 9.30 to 14.00 14.30 to 16.30 Friday 9.30 to 14.00 14.30 to 16.15   

Administration team

 Secretary to Dr Champion, Dr Mundy and Dr Vara.

 T: 020 7188 0848

 Secretary to Dr Lemonde and Adult Metabolic Consultants. T: 0207 188 4004

  

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  9 

Page 10: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Evelina London Children’s Hospital Welcome to the Paediatric Inherited Metabolic Diseases team

www.evelinalondon.nhs.ukEvelina London Children's Healthcare is part of Guy's and St Thomas' NHS Foundation Trust.

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.

We are the second largest provider of children's services in London.

If your child has been diagnosed with a metabolic condition they will be allocated to one of our paediatric metabolic consultants.

Fundraising and charities:

The paediatric metabolic team consists of many different staff all with different roles.

Evelina London Children’s Hospital Charity: www.supportevelina.org.uk

Thanks to generous donations we are able to continue making Evelina London a special place for children. We can all help you in different ways and are happy to

be called for support and advice if you need it. Follow us on Twitter: @SupportEvelina 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: 020 7188 7188 ask for “on-call paediatric registrar covering metabolic” who will be able to liaise with the on-call consultant about your child’s care.

Climb: www.climb.org.uk Supporting families affected by Inherited Metabolic Diseases. You can contact climb for many reasons including

• Family contact services • Family advice services • Information services 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.

• Fundraising support • Conferences, workshops and education days

 

10  3 

Page 11: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

Contact us Contents

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.

3 Welcome to your Paediatric Inherited Metabolic (IMD) team

4 Who is in the team and how can they help? t: 020 7188 3003 10am to 5pm, Monday to Friday e: [email protected] 4 Consultants and administration team

5 Nursing team 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.

6 Dietetic team

6 Appointment centre t: 020 7188 8801 (PALS) e: [email protected]

7 Savannah ward t: 020 7188 3514 (complaints) e: [email protected]

7 Travelling to the hospital 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: 020 7188 8815 e: [email protected]

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?

NHS Choices Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health.

9 Can I claim for travel?

w: www.nhs.uk 10 Charities and fundraising

11 Contact us 12 Map

11 

Leaflet number: 4411/VER1 Date published: May 2017

Review date: May 2020 © 2017 Guy’s and St Thomas’ NHS Foundation Trust

Page 12: Paediatric Inherited Metabolic Diseases (IMD) Team · Paediatric Inherited Metabolic Diseases (IMD) Team 12. ... Leaflet number: ... Paediatric Inherited Metabolic Diseases (IMD)

   

 

Paediatric Inherited Metabolic Diseases (IMD) Team

12 


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