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Referral Guidelines

We welcome referrals from both primary and secondary care. The patient needs to be in agreement with your referral. We are unable to accept self-referrals by patients.

Please note; we have separate Clinical Genetics patient notes, holding confidential family information, and will not necessarily have access to the patient’s hospital notes.

 How to make a referral                                             Cancer Referrals                                                                           
 Urgent referrals for hospital in-patients  Cardiac Referrals
 Prenatal Referrals  Huntington's Disease Referrals
 Paediatric Referrals  Specialist clinic list
 Adult Referrals  

How to make a referral

Please write to us at:
Yorkshire Regional Genetics Service
3rd Floor
Chapel Allerton Hospital
Chapeltown Road
Leeds
LS7 4SA

Urgent referrals can be faxed to 0113 3924434

Information we require in a referral includes:

  • Full patient details including NHS number
  • Patient telephone number for referral of pregnant patients
  • Clinical details and copies of helpful clinic letter(s)/results
  • Relevant family history

Additional helpful information includes:

  • Patient telephone contact number if possible (essential if pregnant)
  • Name and DOB of affected relative(s), particularly if living in the Yorkshire & Humber area
  • Preferred clinic location. See below for a list of clinics. Please note, due to the specialist nature of our clinics it may not always be possible to see patients in their nearest hospital. 

Leeds General Infirmary

Chapel Allerton Hospital, Leeds

Seacroft Hospital, Leeds

St James's University Hospital, Leeds

Airedale Hospital

Bradford Royal Infirmary

Bradford St Lukes

Calderdale Royal Hospital, Halifax  

Castle Hill Hospital, Hull

Dewsbury and District Hospital

Friarage Hospital, Northallerton 

Harrogate District Hospital

Huddersfield Royal Infirmary

Hull Royal Infirmary 

Pinderfields General Hospital, Wakefield 

Pontefract General Infirmary

Scarborough District Hospital 

Scunthorpe General Hospital  

York District Hospital

 

You can make a referral using the ‘Choose and Book’ system. However, the complex nature of the different types of clinics we offer does not fit easily with this system.

We always try to accommodate patients’ expressed preferences as far as possible.

Urgent Referrals for Hospital In Patients

We accept referrals for in-patients with an urgent need for genetic input to their acute medical management, e.g. in the intensive care setting. We also endeavour to see on an urgent basis any fetal loss, still-birth or neonatal death where there is a concern about a genetic diagnosis.

Please contact the Clinical Genetics Department by telephone on 0113 3924432 to inform us of the referral request. We will also require a faxed written referral to the Department.

Please fax the written referral to 0113 3924434.

Prenatal referrals

Any pregnant couple who has concerns about a genetic problem within their family, or where fetal anomaly has been detected in their pregnancy, can be referred. Prenatal referrals are all treated as urgent within Clinical Genetics

Please contact the Clinical Genetics Department by telephone on 0113 3924432 to inform us of the referral request. We will also require a written referral faxed to 0113 3924434.

Patients will be contacted by telephone on receipt of referral to arrange an urgent clinic appointment.

Prenatal Genetic clinics are held at the Ante-Natal clinic at the Leeds General Infirmary on a weekly basis.

Referral letter should state:

  • Patient telephone number (daytime)
  • Date of LMP or EDD
  • Details of affected individual(s) if family history of genetic condition
  • Name and DOB of affected relative(s), particularly if living in the Yorkshire & Humber area

The best time for referral for a known genetic problem within a family is before a couple conceives.

Paediatric referrals

We welcome referral of any infant or child affected by or suspected to have a genetic condition or with a family history of a genetic condition.
Some more common reasons for referral include:

  • Multiple congenital anomalies
  • Learning difficulties
  • Dysmorphic features
  • Hearing loss
  • Parental concern about recurrence risk

Adult referrals

We welcome referral of any adult individual affected by, or with a family history of, a genetic condition.

Common referrals include:-

  • Haemochromatosis
  • Alpha-1 antitrypsin deficiency
  • Cystic fibrosis
  • Chromosomal abnormalities
  • Neuromuscular conditions
  • Family history of cancer (see below)
  • Inherited cardiac conditions (see below)
  • Huntington's disease (see below)

Adult genetic clinics are held throughout the region and referrals are usually seen as locally as possible.

Family history of Cancer referrals

We welcome referral of any individual who has a diagnosis themselves or has a family history of:-

Any unusual or atypical cancers, including phaeochromocytoma

 Multiple cancers in the family of the same type or pattern including:-

  • Breast and /or ovarian
  • Bowel cancer
  • Endometrial cancer
  • Renal cancer
  • Endocrine cancer

Please send a written referral.

If your patient is very unwell or has an affected relative who is terminally ill please inform us so that if necessary we can expedite intervention. This may include storage of a DNA sample for possible future gene testing. Identification of a gene mutation in a family requires a sample from an individual affected by cancer.

If a mutation is known within the family, please give us information about this in the referral, with details of the affected relative. An appointment for discussion of predictive testing can then be made. Otherwise, your patient’s risk of cancer will be assessed. If we have already assessed another family member, please give details of this relative to avoid any duplication.

Your patient will usually be sent a questionnaire asking for details about all family members, including those with and without a diagnosis of cancer, to allow a risk assessment. The more information your patient can supply, the more accurate the risk assessment will be.

If your patient is assessed to be at low risk of inherited cancer, then they and you will be sent an explanatory letter. A clinic appointment is not usually required.

For patients assessed to be at increased risk of inherited cancer, they will usually be sent a clinic appointment for discussion of the assessment, genetic counselling, information about screening and ways to reduce their risk and, where appropriate, the possibility of genetic testing.

Cardiac referrals

We welcome referral of patients of any age with a history or family history of an inherited cardiac condition, eg cardiomyopathy, arrhythmias, sudden unexplained death, Marfan syndrome, vascular dissection or rupture. Where possible, these patients are seen in a cardiac genetics clinic.

Referral letter should include:

  • Patient telephone number (daytime)
  • Details of affected individual(s) if family history present
  • Copy of echo report where available, including specific measurements for Sinus of Valsalva in suspected Marfan syndrome
What to expect from your cardiac genetics clinic appointment

 We are not commissioned to see patients with suspected Familial Hypercholesterolaemia. These patients require referral to the Lipid Clinic.

Huntington's Disease Referrals

We welcome referrals of patients suspected to have Huntington’s Disease (HD) or with a family history of the condition.

We have a dedicated team of Genetic Counsellors and Consultants, who offer counselling and, if appropriate, testing (diagnostic or predictive testing). We do not accept direct access requests to the laboratory for any HD testing. This ensures all patients are fully informed by the genetics team before deciding on whether to have an HD test.

What to expect from your genetics clinic appointment with the Huntington’s Disease Team.

Specialist Clinics List

We run a number of specialist clinics, mainly based in Leeds, including the clinics for the following:-

 

PGD Clinic

In Leeds we provide the North of England satellite unit for the Guy’s and St Thomas’ PGD Service. We accept referrals from throughout the North of England for information about PGD. We provide counselling, investigation and treatment work-up for couples undergoing PGD, and minimising the number of trips required to London. Clinics are held at Seacroft Hospital in Leeds.

Neurofibromatosis type 1

In 2009 the NCG (nationally commissioning group for complex diseases) funded 2 neurofibrmatosis centres, one in Manchester at St Mary's Hospital and one in London at Guy’s Hospital, covering both neurofibromatosis Type 1 and Type 2.  The NF1 service for Manchester has 3 specialist NF1 nurses to support patients in the North of England.  Joanne Allen covers both Manchester and Yorkshire and is based one day a week at the Yorkshire Regional Genetics Service at Chapel Allerton Hospital in Leeds.

Jo works alongside Dr Angus Dobbie Consultant Geneticist and Saghira Malik a NF1 Genetic Counsellor in the Yorkshire Regional Genetics Service at Chapel Allerton where Dr Dobbie runs a regional NF1 clinic for both adults and children with NF1. Jo’s role is to support patients with complex NF1 including optic pathway gliomas, large plexiform neurofibromas, pseudarthrosis, peripheral nerve sheath tumours and other NF1 related malignancies such as GIST tumours.  Jo attends the clinics with Angus and Saghira as well as home and hospital visits and telephone support and advice for patients in the Yorkshire area.  Her aim is to co-ordinate the care of patients and is happy to be contacted about any patient with complex NF1.

Jo also works with Dr Sue Picton a Paediatric Oncologist at St James's University Hospital who co-ordinates the management of children with NF1 and a malignancy.  Patients can now be offered PET scans for their plexiform neurofibromas or other malignancies funded by the NCG. Dr Huson, the Clinical Lead for the NF1 NCG service in Manchester, will have a joint clinic with Dr Dobbie in Leeds to manage adult NF1 patients with large plexiforms.

Children under the age of 8 with NF1 should have annual ophthalmic review and Dr Ian Simmons provides this service for NF1 children in Leeds.

The aim of the NF1 service is to provide the best clinical service to families with this lifelong genetic condition and to work with local clinicians in providing this. 

Jo can be contacted on 0161 901 0285.


Page updated: 28/10/2014 | Updated by: Katherine Thomas

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