CTOH services

Working as a combined oncology (cancer) and haematology (blood disorder) service, we deliver a complete package of care from diagnosis through to long term follow-up into adult life.

Picture of a young cancer patient in a ward

Oncology

Leeds Children’s Hospital is a regional specialist centre for the treatment of solid tumours and the largest paediatric oncology unit in the North East of England. We treat all cancers occurring in children and young people (including brain tumours, solid tumours and leukemias’s and offer chemotherapy, radiotherapy, stem-cell transplant and surgical treatments as required. We work as a multidisciplinary team to ensure the best quality care for our patients and have weekly meetings to plan and review treatment, working closely with the radiology, surgery and pathology departments to ensure prompt diagnosis and treatment.

We have a purpose-built day care unit and four specialist in-patient units (Wards L31, L32 and L33 at Leeds General Infirmary and ward J94, Bexley Wing, St James’s University Hospital for young people). Our service extends beyond the Leeds Teaching Hospitals with close liaison with services in the community, including health, social care and education in order to provide comprehensive care for patients and their families.

We are proud to promote research in our work and seek to offer every patient the opportunity to contribute to high-quality scientific studies. We participate in national and multinational treatment trials for the treatment of solid tumours.

Care is provided by a large team of expert doctors, nurses, pharmacists, dieticians, social workers, physiotherapists, psychologists, and other allied health professionals (see meet the team). All patients and families are supported by a named key-worker (see Children’s Haematology and Oncology Outreach Team and the Teenage and Young Adult Service).

The solid tumours treated include:

  • Ewings sarcoma
  • Germ cell tumours
  • Hepatoblastoma
  • Hepatocellular carcinoma
  • Hodgkin’s Lymphoma
  • Langerhans’ Cell Histiocytosis
  • Neuroblastoma
  • Non-hodgkin’s lymphoma
  • Osteosarcoma
  • Primitive neuro-ectodermal tumours (PNETs)
  • Retinoblastoma
  • Rhabdomyosarcomas
  • Other Soft tissue Sarcomas
  • Wilm’s Tumour
  • Along with many other, rarer, tumour types.

Haematology

The haematology service based at the Yorkshire Regional Paediatric Haematology and Oncology Unit offers secondary and tertiary care for children with all haematology disorders from across West and North Yorkshire and Humberside.

It includes three Consultants, Dr. Mike Richards, Dr. Beki James, Dr Jacob Grinfeld and junior haematology medical staff.

It includes a regional comprehensive care haemophilia centre and a comprehensive thalassaemia and haemoglobinopathy centre.

There are weekly clinics for most disorders; rare disorders such as bone marrow failure syndromes are seen in specialised clinics including clinics for Shwachman Diamond syndrome and other bone marrow failure syndromes.

The outpatient department is based in the Children & Teenage Haematology and Oncology Day Unit in Clarendon Wing at the Leeds General Infirmary, shared care is also provided to regional centres.

Palliative and end of life care

Palliative care is an approach that aims to improve the quality of life of patients and their families facing life-threatening or life-limiting illness. Palliative care is concerned with managing the problems or symptoms that cancer can cause and providing support for the whole family at this difficult time when cure may no longer be possible.

Its aims are:

  • To arrange services to meet the specific needs of your child and whole family
  • To manage symptoms promptly
  • To provide care where you want it (as far as possible)
  • To provide your whole family with as much support as you need

A whole team of professionals is available and works together to meet these aims, some of which will already be known to you. This may include:

  • Your GP
  • Your hospital consultant
  • Your Children’s Haematology & Oncology Outreach and/or TYA CNS
  • Your social worker
  • Local community nurses
  • Doctors and nurses specialising in palliative care
  • Children’s hospices
  • Other significant people e.g. teachers, clergy

A key worker, usually your children’s haematology and oncology outreach nurse specialist, will lead the team and coordinate care.

Your key worker will:

  • Discuss with you the options for palliative care and the services that may be available to support you and your family in your local community.
  • Develop and share plans with you about how symptoms could be managed.
  • Keep in regular contact with you to review and update plans and to provide emotional and psychological support.
  • Aim to respond to new symptoms as they develop working with local services so they can be addressed promptly.
  • Provide practical and emotional support at the time of death and beyond

The team of Nurse Specialists in the department operate a 24 hour on call service. You will be given the contact details for this service that you can contact any time of day or night to help address any problems that your child may have and to provide support to your family.

How to contact us

You will be given the individual mobile telephone number of your allocated nurse specialist (Key Worker) along with details of how to contact our out of hours palliative care on call service.

You can also contact our office on 0113 3922323. 

Research

In order to improve the treatment for childhood cancer and its side effects, it is necessary to carry out research. Our unit is involved in many national and international trials as well as studies we conduct locally that investigate many aspects of cancer care including:

  • Improvement of current standard treatments for different types of cancer.
  • New anti-cancer drugs (often referred to as early phase clinical trials).
  • Studies looking more closely at the biology of cancer and its treatment (biological studies).
  • Studies looking more closely at the way drugs are used by the body (Pharmacokinetic or PK studies):
    • Improving the quality of life of people who have been treated for cancer.
    • Improvement of services for children, teenagers and young adults with cancer.

Most investigations into new procedures and drugs start in the laboratory and are then well tested on adults before being introduced into the ward or clinic. Some trials are looking at new drugs and whether they may have any benefits in children and teenage oncology. Other trials involve the use of drugs that are well established in the treatment of cancer but examine their benefits when they are compared to other standard treatment or are administered in a slightly different regimen. All trials are submitted to a research ethics committee for approval before they can be conducted.

There is a research team comprising of nurses, support workers and data managers for the paediatric/ TYA oncology unit, who have wide and varied experience in oncology and research. Between them they coordinate and run the research and clinical trials on the unit & they visit the clinical areas every day. They may come and see you when you are on the ward or in the clinic to talk to you about a study or trial that may be relevant to your child’s treatment and will be happy to answer any questions you may have.

If you are approached and asked if you would like your child to take part in one or more of the trials, you will be given all the necessary information and your consent would be entirely voluntary. You are free to refuse to take part, and this will not affect your child’s care in anyway.

If you participate in a trial, you will be spoken to in detail before you make a decision. You will be kept up to date during the study and your child will be monitored closely both during and afterwards.

The research team have a large commitment to research. This is reflected in the size of the team and the large portfolio of studies that we are involved in.

These studies can be local (within LTHT), national, Europe wide or global projects. Because childhood  teenage and young adult cancers are very rare the research is best co-ordinated via a national network in order to recruit a large enough population of patients to make the results significant and delivered within a defined timescale.

To conduct this research and to facilitate a wide range of studies we are involved with many agencies:

  • ECMC – Experimental Cancer Medicines Centre
  • CCLG – Children’s cancer and leukaemia group
  • NIHR – National institute for Health Research
  • Various Commercial companies
  • CLRN – Comprehensive local research network
  • YCRN – Yorkshire cancer research Network
  • MCRN – Medicines for Children Network
  • CRUK – Cancer Research UK
  • ITCC – Innovative therapies for Children with Cancer

Disease groups for which we currently have studies available or planned for are: 

  • ALL
  • AML
  • Neuroblastoma
  • CNS tumours (Brain and spinal tumours)
  • Liver tumours
  • Hodgkin’s disease
  • Non Hodgkin’s lymphomas
  • Germ Cell tumours
  • Kidney tumours
  • Ewing sarcomas
  • Osteosarcomas

Improving the treatments for cancer is very important and forms a large part of what we do but we also conduct research into reducing the side effects of cancer therapies, new drugs to help combat these side effects, biological factors that affect cancer and the effect cancer has on people’s lives both in the short and long term.

How can I be involved?

Many of our studies are specific group of patients and part of the role of our research nurses is to regularly check for these “eligible” patients so that when they attend the ward or day unit they can be approached by the research nurses or medical staff about a study. However, some of our studies may be conducted across many disease groups. If you are interested in taking part in a study and want to find out If there is something available for you it is ok to ask!

You can ask the Doctors on the ward or in the day unit.

You can ask the ward staff to contact the research team and we will come to see you either on the ward or in clinic, our number is 0113 3922159. 

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