Contact Details



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Patient Held Record Folder

This folder belongs to _________________________

Uses of your

Patient Held Record Folder

This information folder has been produced to benefit your child; yourself and the professionals involved in his/her care. It is for you to add information, clinic letters, leaflets or anything else you may find useful

I. Bring to every ward admission: whether planned or emergency

It will provide useful information to the ward staff without having to wait

for the notes. You will also be able to collect more information during every visit.

2. Bring to every outpatient clinic:

New information and any change in medication can be documented.

3. Take on holiday:

It will give information about your child's illness and treatment should you need it. It will also have a record of hospital contact details, which could prove useful to other healthcare professionals.

4. Take to other hospitals.

5. To give information to community services:

It will be useful as a source of information for your GP, health visitor, social worker, school nurse, teacher etc and will promote effective communication.

6. Serve as a record for yourself.

This folder is your child's property and it is your responsibility to ensure that its contents are maintained confidentially.

Note: The hospital cannot take any responsibility for the loss of or the consequences of the loss of this folder.

Contact Details

Ward L51 (Children’s Cardiac Ward) 0113 392 7451

Level D

Clarendon Wing LGI

Great George Street

Leeds

LS1 3EX

Ward L47 (Cardiac Intensive Care Unit) 0113 392 7447

Level D

Clarendon Wing LGI

Website

Cardiac Nurse Specialists 0113 392 5467

Email ccns.lgi@

Clinical Psychology and Counselling Team 0113 3926796

Secretaries

Dr Barwick 0113 392 8159

Dr Bentham 0113 392 8184

Dr Blackburn 0113 392 5783

Dr Brown 0113 392 5738

Dr Deri 0113 392 8086

Dr Hares 0113 392 5783

Dr Michael 0113 392 5783

Dr Thomson 0113 392 8184

Dr Willcoxson 0113 392 8159

Miss Van Doorn 0113 392 8059

Mr Congiu 0113 392 8059

Mr Jaber 0113 392 8059

Other useful numbers

Paediatric Cardiology Outpatients 0113 392 5689

Appointment Clerks 0113 392 5322

Appointments

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Medications

Use the table below to keep a list of your child’s current medications. Any changes to medications at clinic appointments can then be easily added.

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Ward L51 - Children’s Cardiac Ward

Welcome

Having a child with a cardiac condition can be very difficult for all the family and we will do everything we can to make things easier. You and your child are very welcome to visit us on the ward. This would give you the opportunity to find out more about the ward and make things more familiar when you are admitted. Our Cardiac Nurse Specialists will be happy to arrange this for you and can be contacted on 0113 3925467.

Preparing for an admission

Preparing your child for hospital will help relieve worries and anxieties. It also helps if brothers and sisters are involved and are told what is going on. It is important to be honest about coming into hospital and any procedures or surgery.

Our website has with a wealth of information on our services from foetal through to adult including the team, admission and discharge, surgery, cardiac catheters, care following surgery and much more:

←

There are several books and leaflets available for children and young people:

← ‘Sammy’s Heart Operation’ can be ordered or downloaded from the British Heart Foundation website at .uk

← ‘Davy the Detective: Finding out about anaesthetics’ and ‘Rees Bear has an anaesthetic’ can both be found at

Your local library will also have several books regarding general hospital admissions.

If your child is going to have surgery you will meet a play specialist at a pre-assessment appointment who will help prepare your child for their admission. If you feel that your child is worried about their admission the L51 play specialists Emma Marshall and Gemma Jackson, or the psychologists can arrange play sessions with your child. For any older children the psychologists can meet with them to discuss their worries and concerns.

How to Get Here

Ward L51 is on D floor of the Clarendon Wing

By Car

Leeds General Infirmary is situated in the centre of the city, behind the Town Hall. Follow signs for the loop traffic system, then for the hospital. The multi-story car park is located on Clarendon Way, Sat Nav postcode LS2 9DA. There are other hospital car parks but parking facilities is limited. Parking permits are available for resident parents (only one per family) please ask the ward staff to arrange this for you. There are other car parks within Leeds city centre, the nearest one is the Woodhouse Lane multi-story car park situated on Woodhouse Lane, LS2 9AQ.

By train

The nearest train station is Leeds city station, which is a good 15-minute walk. You may need to take a taxi, or use the city bus for 50p per person, which picks up on the station forecourt and has a stop outside the Jubilee Wing, to get to the hospital.

If you are claiming any benefits the hospital finance department may reimburse public transport fares or mileage if you bring your child into, or take them home from hospital. Taxi fares, however, cannot be reimbursed. Please ensure you have the appropriate benefit documentation with you.

Staying in the Hospital

Whilst your child is an inpatient on ward L51, one parent can stay overnight on the ward. Your child may need to spend some time on Paediatric Intensive Care: ward L47, or in High Dependency within ward L51. Whilst there, parents cannot sleep by their bed, we will therefore try and provide accommodation within the hospital grounds, usually for two adults.

Eckersley House is charity funded accommodation for Leeds Children’s Hospital, which has larger family rooms for families whilst their child is on Intensive Care. They cannot guarantee they can provide a room but if you are travelling from a distance or have other children you need to stay with you, you can call them and ask to be put on their provisional waiting list once you get an admission date. Their number is 0113 3926505.

Visiting Times

Please ensure any visitors, including yourself, do not have any infections when visiting your child. Anyone who is unwell, or has been in contact with an infectious disease should check with the ward before visiting.

Ward L51

6.00am - 10.00am: Parents Only

10.00am - 8.00pm: Up to 3 visitors at a time, 1 must always be a parent

8.00pm - 10.00pm: Parents Only

10.00pm - 6.00am: 1 parents overnight (ward patients only)

Siblings can visit as long as they are infection free and must always be accompanied by an adult. We advise against any other children visiting due to the risk of infection. No very young children to visit without permission from the nurse in charge. No children under 16yrs are allowed to visit without adult supervision.

Ward L47 (PICU)

Parents can visit anytime

Other visitors 3.00pm - 7.00pm

Children can only visit at the discretion of the nurse in charge, please ask before bringing them onto the intensive care unit as it can be very distressing for them.

Other Information

Food

You can purchase food from the Food Court on C floor of the Clarendon Wing, please check with the ward for the opening times. There is also a Costa Coffee on A floor Clarendon Wing and B floor Jubilee Wing. There is a Tesco Express on the roundabout outside the Jubilee Wing. There are plenty of shops and cafes a short walk away, please ask the ward staff for more details.

Parent’s Room

The parent’s room on ward L51 has hot drink making facilities, we ask that you bring your own tea and coffee. There is also a fridge/freezer and cupboards for you to store food, please label any food you bring in. All hot drinks must be kept in the parent’s room unless they are in a cup with a lid on it. Children are not allowed in the parent’s room.

What to Bring With You

The hospital cannot take responsibility if possessions are lost, so please leave valuables at home.

Clothes

Your child will need clothes for daytime and bedtime use - light comfortable clothing is best. For babies sleep suits which open down the middle are best, especially following surgery. They allow the ward staff to look at surgical wounds without disturbing your baby too much and also allow for any lines and drains your child may need. Older children often prefer to wear pyjamas that open at the front, rather than a t-shirt following surgery as it can be uncomfortable to lift their arms up for the first few days. Please also remember to bring slippers, we do not advise walking round the ward in bare feet or socks. Older children may like to wear a dressing gown whilst out of bed.

Toiletries

Bring the things your child uses at home, including nappies. There are small towels available on the ward.

Comforters

Don’t forget to pack your child's comforter: such as a blanket or teddy - no matter how old or well worn.

Toys

We have many toys on the ward but you might like to bring some of your child's favourites from home. Please remember to identify them with their name to prevent confusion. Each bedspace on the ward has a TV with a DVD player. We have lots of DVDs but you may wish to bring some of your own. HDU beds do not have a TV by the bed space so you may wish to bring portable a DVD player or a tablet if your child is in there for any length of time. Please ask ward staff for details of the Leeds Teaching Hospitals Trust Wifi.

Medications

Please bring all the tablets, medicines and creams that your child uses at home and hand them to the nursing staff on admission for safekeeping.

Food

The ward provides 3 meals a day for your child but you may like to bring in some snacks for them, or their favourite treats.

Surgery

If your child has to have an operation, it will be a worrying time for you all, but it helps to know what is going to happen.

Before admission

← You will meet with your child’s surgeon to discuss their condition and the surgery.

← You will be asked to attend a pre-surgery assessment appointment around 1-2 weeks before your child’s surgery. At this appointment you will be given a wash and some nose cream to use for the week before their admission. This is to reduce the risk of serious wound infections after surgery, from bacteria such as MRSA.

Before their operation

← You will see the surgeon again to sign the consent form. You will also see the anaesthetist to discuss how your child will go to sleep. If you feel your child will be very anxious the anaesthetist can prescribe some medicine to help them feel calm and sleepy.

← Your child will need to fast for several hours so will not be allowed to eat or drink; the nursing staff will tell you when they will need to stop eating and drinking/having milk feeds. This is important as anything given during this time could cause vomiting, during or after the operation.

← Just before they go to the anaesthetic room they will need to have a wash or bath and will then be asked to put on a clean gown. If your child needs a cannula a local anaesthetic cream - ‘magic cream’ can be applied to numb the area.

← Both parents can go into the anaesthetic room whilst your child goes to sleep. Once they are asleep the nurse will bring you back to the ward.

After their operation

← In order to provide the necessary care it is usual for children to be nursed in the Intensive Care Unit (Ward 47), after their operation. It can be upsetting seeing your child on intensive care; a visit can be arranged prior to your child being transferred to help prepare you.

← When your child is transferred to intensive care they will be have a tube in either their mouth or their nose that is connected to a machine called a ventilator that is helping them to breathe. They will also have several lines which will be connected to different medications and drips. These medicines will be helping to support their heart whilst they recover, providing pain relief and helping to keep them asleep. They are likely to have at least one chest drain in, to allow any excess fluid to drain out of the chest. Temporary pacing wires are also placed in the heart and sit outside the chest in case your child’s heart needs some help following surgery.

← Once your child can breathe on their own and is stable, they will be transferred back to either ward L51 or the high dependency unit on ward L51, where they will start to eat, walk and play again.

Children’s Cardiac Nurse Specialists

Our team is made up of 7 experienced Children’s Cardiac Nurses who provide support and advice for all families with children with cardiac conditions:

← Elaine Woolley

← Mike Fresson

← Marie Wray

← Lyndsay Bamford

← Emma Duffy

← Catherine Brown

← Rachel O’Reilly

We will see you on the ward and in outpatient clinics. We can also provide information for schools and other health professionals involved in your child’s care.

Contact Us

Tel: 0113 3925467, Monday - Friday; 08.00 - 16.00.

Email: ccns.lgi@

Facebook group: Leeds Congenital Heart Unit

Charities & Support Groups

Children’s Heart Surgery Fund

The Children’s Heart Surgery Fund is our Leeds based charity providing support for children and adults born with congenital heart defects and their families. They also provide funding for much of the equipment used today for our cardiac patients in the hospital.

For more information visit their website at ; call them on 0113 3925742 or email info@.uk.

They also have a Facebook support group for parents, search for Children’s Heart Surgery Fund.

Other support Groups

British Heart Foundation Tel: 0300 330 3322 Website: .uk

Children's Heart Federation Tel: 0808 808 5000 Website: .uk

Down's Heart Group Tel: 0300 102 1644 Website: .uk

Heartline Tel: 0127 670 7636 Website: .uk

Little Hearts Matter Tel: 0121 455 8982 Website: .uk

Lagan’s Foundation Tel: 01204 468300 Website: .uk

They can provide all kinds of useful information and advice for those caring for a sick child.

Your views

We are constantly trying to improve the service we provide to patients, their family and friends. If you have any compliments, suggestions or complaints please speak to your allocated nurse. Or, if you wish to speak in confidence to a member of the management team please contact the matron or the Patient Advice Liaison Service (PALS) on 0113 2066261

MONITORING OF RESULTS AT THE LEEDS GENERAL INFIRMARY

Here at the LGI we take our responsibilities to your child very seriously. We continually monitor the performance of the unit in different ways, and take early action if we notice any changes which may indicate a problem.

Every week we discuss how best to manage patients in a multi-disciplinary team meeting which involves all of the cardiologists and surgeons, alongside the nurses, echo staff and other individuals who are important in the care your child receives. In particular, we review each of the cases who are due to have surgery over the following week to ensure that all concerned are fully aware of the details of each case, including any changes which may have occurred since the patient was initially listed.

Once a month we have a Clinical Governance and Audit meeting. In this meeting the whole team come together to discuss, in detail, any cases where complications that have occurred. We aim to learn as much as we can from these events so that we can continually make improvements in the quality of the care we provide. We regularly audit areas of our practice, for instance wound infections, post-operative complications, and hospital acquired infections to ensure that any significant increase in the rate of these is dealt with promptly. In these monthly meetings we also review the surgical mortality (death rates) over the preceding 12 months, in comparison with the national standard. This is a new development which was installed in April 2013, which we feel will be a useful addition to our current programme of quality assurance.

The Trust management also monitor performance of the Congenital Heart Disease department through analysis of national statistics which are generated for all hospitals.

In addition, Leeds General Infirmary, along with all centres performing surgical or interventional procedures in patients with congenital heart disease submit data regarding all procedures to a national database. This database is hosted by NICOR (National Institute for Cardiovascular Outcomes Research), and analysed data can be accessed by the public at .uk. The data is used to monitor unit activity and help the NHS plan how to improve your care. The website allows you as a parent to examine the numbers of procedures performed, and the 30 day and 12 month outcomes for each centre and for each specific procedure. You may find this data useful, particularly if your child is waiting for surgery or an interventional procedure. If you have any questions about how to interpret the data on the national database, please don’t hesitate to contact the specialist nursing team who will be able to help you through it.

Second Opinion

Why ask for a second opinion?

Reasons for asking for a second opinion include:

• wanting another cardiologist to confirm the initial diagnosis

• wanting another cardiologist’s opinion on your child’s treatment

• having an operation by a surgeon who works at a different unit

• having concerns about some aspect of the care or treatment your child is currently receiving

Your right to a second opinion

Whatever your reason, the NHS entitles you to ask for a second opinion. In Leeds we have no problem at all with you seeking a second opinion. Indeed, you will sometimes find that your cardiologist or surgeon will want to seek a second opinion on your behalf, particularly if your child’s case is especially complicated.

How to get a second opinion

There are two main routes for getting a second opinion:

1. Ask your GP to arrange an appointment with a cardiologist at a different congenital cardiac unit. Your GP will then contact the centre to arrange for up to date information about your child’s care.

2. Ask your cardiologist. The cardiologists will be happy to help you get a second opinion and will often suggest another cardiologist you can see.

Please do not feel uncomfortable talking to us about this subject. The most important thing is to make sure your child is getting the best possible care. Please make sure that the cardiologist or surgeon you are planning to see is from another specialist congenital heart disease unit in England. We are happy to give you advice regarding this.

For more information, or any advice, please contact the Paediatric Congenital Nurse Specialists at Leeds General Infirmary on 0113 3925467.

Written by the Congenital Team 2010, updated and reviewed May 2017.

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