Nottingham University Hospital, Children's and Young People's Rheumatology Service

   
09/10/07 : Liz Hutchinson, Clinical Nurse Specialist and Dr Helen Venning, Consultant Paediatric Rheumatologist

Introduction The Nottingham University Hospital Children and Young People’s Rheumatology Service is based at the Queen’s Medical Centre in Nottingham. The service supports a wider network, which provides care for Children and Young People across the whole of the East Midlands (Nottinghamshire, the majority of Lincolnshire, parts of Cambridgeshire, Leicestershire, Northamptonshire, Derbyshire and South Yorkshire).

Referrals often come from further a field the reason for this is that because across the country there are very few doctors, Consultant Paediatric Rheumatologists, who specialise purely in the care of Children and Young People with rheumatological illnesses. Outreach clinics are currently provided in Lincoln, Mansfield and Peterborough to minimise patients travelling to Nottingham and to ensure good relationships are developed with local teams.

This service has been established for approximately twenty years. Initially run by Dr Helen Venning working single-handed, with the support of a part time secretary, for the first fifteen years . Over the last five years there has been significant expansion of the team seeing the addition of a second Consultant Paediatric Rheumatologist and one full time and one part time Clinical Nurse Specialist (CNS) and a full time secretary. We run the service as a team so that patients can always have access to someone who knows about them and their needs.

Meet the team

		The patients and their families are the most important members of our team. We respect this by calling them by the names they choose to be known by and equally they can call the other members of the team by their preferred name if they choose.

Dr Helen Venning predominantly manages the development of the service and the shared care patients she is also the Regional Advisor for young people with Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS/ME).

Dr Satyapal Rangaraj, (Ranga as he is known to us all) originally worked with us as a registrar and then took up his post as a Consultant in March 2006. Ranga provides the joint injection service and predominantly manages the new patients and the inpatients.

Liz Hutchinson works full time as a Clinical Nurse Specialist. Her role has been to support the patients and the professionals who care for them in the shared care centres and to lead service development across the region.

Nikki Camina works part time as a Clinical Nurse Specialist. She undertakes most of the audit work ensuring that we comply with NICE guidance. Nikki has developed and written most of our patient information leaflets of which we have almost 30. These are available by contacting Nikki at nikki.camina@nuh.nhs.uk

Jan Wright works full time as the secretary to the service and tries to keep us all in order.

We also have registrars who work with us; they often stay with us for at least a year. Some of the Registrars are undertaking their specialist training prior to becoming Consultant Paediatric Rheumatologists of the future.

We also work extremely closely with our Physiotherapy, Occupational Therapy, Complementary Therapy, Hospital School, Outpatients Department, Hospital Wards, Pharmacy, Pharmacy Home Delivery Company, Family Therapy, Hospital Play Specialist, Adult Rheumatology, Dermatology, Ophthalmology and Renal colleagues.

In our shared care clinics we have link staff, with an interest in paediatric rheumatology, that are able to support families on a day-to-day basis. In Mansfield we share care with Dr David Bond, Consultant Paediatrician and Dr Ken Lim Consultant Rheumatologist. In Lincoln we share care with Laura Hunter, CNS and Jane Roberts Physiotherapist, and in Peterborough we share care with Dr Venkat Reddy Consultant Paediatrician, Erica Crust, Ward Manager and Laura Staines, Physiotherapist.

Aims of the service

To provide high quality care for children and young people with rheumatological illnesses as near to their homes as possible and wherever we can to provide or enable them to receive their care at home. For example the majority of our patients who require subcutaneous methotrexate, disease modifying anti-rheumatic drug, give their own injections; the youngest child to do this was 7 years old. When children and young people have to be seen in hospital it is as infrequently as it can possibly be and where possible investigations are organised to take place on the same day as an outpatient.

Caring for Children and Young People

		The majority of our patients have Juvenile Idiopathic Arthritis (JIA), although we also care for patients with a wide range of other inflammatory or auto-immune conditions for example Systemic Lupus Erythematosus (SLE) and Juvenile Dermatomyositis (JDM). We offer to see new patients up to the age of 19.The adult services will occasionally see patients from 16 years of age but patients can access the expertise in both departments as shared care if they wish. In managing patients with arthritis care can range from taking regular ibuprofen for a few weeks in patients affected most mildly to the use of methotrexate and biological therapies in the most severely affected patients.

Children and their families are initially given at least an hour for their first appointment. This allows time for a full history to be taken and for the child and their family to get to know us.

All patients have access to the CNS’s following the initial appointment and as required further support and information is provided. The CNS’s regularly liaise with the child’s nursery or school, their Health Visitor or School Nurse, their GP and any other professionals involved in the child’s care in the community.

 

Keeping in contact with families

As a team we aim to be as accessible as possible the ways we do this are by offering our patients and families several ways of contacting us, email is especially popular however we also provide a telephone help line and text messaging.

Clinic Letters

All patients are offered copies of their clinic letters and for some families this will mean we send out several copies of the letter e.g. to the young person, their parents and where parents are not living together we offer to send letters to both parents. Copies of clinic letters are also sent to school nurses, health visitors and anyone else whom we, or the family, feel needs to be kept informed (with the patients consent).

Annual Reviews

These take place in our nurse led clinics. These provide the opportunity to reflect upon how things have been over the previous year.

Together we look at a wide range of issues or concerns in particular those relating to:

    * Disease knowledge
    * Medication and drug monitoring
    * Review which other professionals are involved in the child’s care
    * Schooling and Education
    * Risk taking behaviours

The annual review is again tailored to the young person’s age and development. As the young person develops they need to be supported to take responsibility for their illness and its management, ultimately guiding the young person into adult rheumatology services. We encourage the young person to see the nurse initially without their parents. The parents’ then join the end of the consultation to discuss issues raised, which the young person wishes to share with their parents. Support is also provided for those young people moving away to university or starting employment.

A day in the life of the Nottingham Children and Young People’s Rheumatology Team

It’s a Tuesday morning when we hold our ‘One Stop’ clinic. It is called one stop because the children and young people see every one in the team that they need to on the same day. The majority of children and young people who attend this clinic will be taking either methotrexate and or biological therapies. A typical journey through clinic involves having bloods taken, seeing the Doctor, the nurse, the physio, the Occupational therapist and if necessary checking their height and weight, urine and blood pressure. We also have really close links with our ophthalmology (eye) team and they will fit in patients on a Tuesday morning at short notice. Some of the clinics are dedicated to transitional care where young people are prepared for moving across to adult services, our adult rheumatologist joins us for these clinics.

At other clinics we have our dermatology (skin) doctors or our renal (kidney) doctors join us. The benefits of a one stop service are whilst the patients may stay with us at each session for slightly longer, typically a couple of hours, they have fewer trips to hospital and therefore miss less schooling. Many patients prefer to have their appointments at 8.00 a.m. then they can get back to school for most of the day. If we are planning to admit any of the patients we have seen in clinic and they have not been in hospital before they are taken and shown where they will be coming in to. We have very close links with our hospital school and if any school related issues are raised in clinic then we invite John Young our hospital schoolteacher to meet up with the family who in turn will liaise with their school.
We generally see patients monthly to start with but as their condition stabilises and their confidence grows we reduce appointments to three monthly. All our patients know that they can contact us between clinics and we will fit them in sooner. Some will ring at 7.45 on a Tuesday morning to see if we can fit them in that day and then we will.

The team generally start their day at 7.00 am this allows time to check emails, and phone messages and find out if there are any immediate issues with any of our inpatients on the wards. The specialist nurses then make sure that the clinic area is prepared. The play specialist will have put activities out the previous day, the painting is a particular favourite and we have a board in the clinic to display the children’s art work.

At 07.45 we meet as a team to go through who is coming to clinic and discuss any issues or concerns that we know about. We also write on a white board in the clinic area who has medicines to collect and who needs to be seen by which members of the team.

Shortly before 8.00 am patients start arriving – the roads are quieter and the car parks still have spaces!

Once every one has been seen and left the department, as a team we discuss what we each need to do for every patient following clinic. We type out our action plans and email them to our shared care colleagues as needed. This meeting usually ends about 13.30.

We then rush off grab a sandwich and then join up to do our ward round. We check on the situation of the patients on the ward and make sure their treatments are prescribed and their plans for discharge are organised.

Once again we check our emails and answer phones and deal with any messages that result from this. Messages can range from patients being ill and requiring admission, altering of appointments to mums, or dads, phoning in exasperation because their child is refusing their medication and they feel like world war three has broken out.

The rest of the day is spent checking the blood results from the morning clinic, dictating any letters which we didn’t have time to do whilst the clinic was taking place, booking further investigations for example lung function or heart scans. We also make phone calls to schools, GP’s health visitors as necessary to feed back on any issues we have addressed in the clinic.

Then it is back home to catch up on the day with our own children and teenagers !

An example of a patient’s journey (a fictional example of the care young people receive)

Jasmine, aged 12, had been experiencing lots of pain in her fingers and ankles and many other joints with swelling at times. She had become reluctant to attend her ballet classes and football matches and her mother had taken her to see her GP. She was referred initially to our new patient clinic where she was assessed by a Consultant Paediatric Rheumatologist. After undertaking a thorough medical history of both Jasmine and her family and a full clinical examination a diagnosis of Juvenile arthritis was suspected. Jasmine would need blood tests to confirm the diagnosis, methotrexate for long-term management, a short course, 7 days only, of steroids by mouth and initially regular ibuprofen for the pain and inflammation. It was considered that she would also benefit from steroid injections into her ankles.

Jasmine and her parents were naturally very upset and frightened. Recognising that they would be unlikely to take in any further information they briefly meet a nurse who gives them some written information and says she will contact them later in the week for a further chat. Jasmine and her parents agree that she feels up to having her bloods taken today. She is introduced to the play specialist who shows her how blood is taken using a specially adapted doll. Jasmine is given the choice of using cream to numb the area where the blood will be taken. Jasmine chooses to have the cream and the family are encouraged to go for a drink whilst the cream works.

When Jasmine and her parents return from their drink the staff are ready to take the blood sample, the nursery nurse is also ready with her distraction tactics. Fortunately the blood is gained easily and Jasmine is very proud of herself. She is rewarded with a bravery certificate, and some sweets.

The nurse discusses joint injections which will take place the following Friday. Jasmine and her parents are able to chose whether to have her injections using entonox (gas and air) or under a general anaesthetic. Jasmine is shown the entonox and feels she wants to try this rather than have a general anaesthetic. She is given information about where to come to, time etc. The nurse will also make time on this occasion to talk to Jasmine and her parents about starting methotrexate. Both Jasmine and her parents feel it will be better to have the methotrexate by injection as she really struggles to take tablets. The nurse makes her smile when she tells her she can practice giving an injection to her first. She also sees examples of the needle and syringe that is used to give the methotrexate so that she doesn’t imagine something ten times as big.

The family are also given advice about taking steroids. All the advice is backed up with written information and the family know how to contact the team for further advice. Jasmine is going to email the nurse when she gets home to let the team know how she is feeling.

Jasmine comes in on the following Friday, she has emailed the nurse and told her how much better she has felt since starting the steroids. Jasmine comes to the day case surgical unit for her injection. She is checked in and after hearing again about the procedure signs consent with the doctor. Then the play specialist comes and talks to her about the joint injection and she is allowed to see the equipment that will be used. She decides she would like to use the ‘Where’s Wally’ distraction book. The Consultant does the injections, the nurse administers the entonox, the play specialist distracts Jasmine and her mum holds her hands. Jasmine is very giggly with the entonox and is very chuffed with herself once this is complete.

The family have a refreshment break and then they meet again with the nurse to talk through having methotrexate. All the safety issues are discussed. This normally takes an hour and because the family have read the information prior to this session they have lots of questions prepared. Next Jasmine practices the injection technique on the nurse’s arm, as do mum and dad. Jasmine is now feeling confident enough to do her own injection and decides she doesn’t want the numbing cream. She injects herself without difficulty. A time is arranged for the following week when the nurse will visit her at home to do the second injection. The nurse will also liaise with Jasmine’s GP and School nurse to make them aware she has started on Methotrexate and the precautions that need to be observed.

Not all patients find the above as easy as our fictitious patient however we always tailor our care to meet the needs of the child, young person and their family. For example some patients would prefer to have their steroid injections under general anaesthetic and if they do then we would take their blood samples whilst they are anaesthetised.

Summary

Many of our patients do not go on to require long term care however for those that do it is really important that we prepare them well and support them in the care of their arthritis. Patients who are knowledgeable and confident in their care are less likely to experience the long-term complications of arthritis. This can only be achieved if there are enough specialist Consultant Paediatric Rheumatologists and Specialist Paediatric Nurses to diagnose, educate and manage children and young people with arthritis.