Finding the clinic

CUH is a teaching hospital and occasionally there may be students/trainees joining the department. Please tell the clinic staff if you do not wish them to be present during your consultation.

Contact us

On arrival at CUH, the Lysosomal Disorders Unit can be found between wards R2 and the Lewin Rehabilitation Unit.

Follow signs in the hospital to the R block (just beyond the F&G wards) follow directions outside through the Jubilee gardens, then back inside through the electric doors signposted Lysosomal Disorders Unit. On arrival at the unit please ring the doorbell to gain entry.

Finding us

lysosomal disorders unit

How do I get an appointment?

New appointments

(current waiting time 2-6 weeks)

New patients wishing to have an appointment in the department need to be referred by a GP to a member of the medical team. Once the referral has been received a member of the nursing or admin team will call to agree a mutually convenient appointment time (clinics are usually held on Monday, Tuesday and Wednesday). A new consultation will take a minimum of one hour with the doctor plus any specific investigations. If you require a diagnostic blood test (white cell enzymes) this will need to be taken before 1430.

Follow-up appointments

These are generally made in the clinic for the next visit. These can be renegotiated with the nursing or admin staff if there are any difficulties with the appointment.

Each patient is unique and will need different assessment and treatment schedules at different times of their lives. For Gaucher, Fabry and Pompe disease the department has routine visit/assessment schedules, but these may vary according to individual needs.

Disease

Visit schedule

Tests - new patients

Tests - follow up

Gaucher

 

3 monthly / 6 monthly / annual

Blood tests
MRI
X-rays
Bone density

Blood tests
MRI – annually
X-rays – when needed
Bone density – 2-5 years

Fabry 6 monthly / annual

Blood tests
Cardiology – Dr
Cardiology – Echo
GFR – nuclear medicine
Ophthalmology
Audiology

Blood tests
Cardiology – annually
Audiology

Pompe

6 monthly

Blood tests
Lung Function tests
Dietician
Physio

Blood tests
Lung Function tests
Dietician
Physio

What will happen at the appointment?

On arrival you will be expected to book in with the reception desk confirming that your personal details are all correct.

Reception/admin staff

The nursing staff will then check your blood pressure and weight. During your appointment with the doctor you will have the opportunity to ask any questions you may have. The doctor may wish to examine you and you are welcome to have a chaperone upon request. After your consultation the nurse will then take any necessary blood tests and arrange your next appointment together with any other tests the doctor has recommended.

Who should I bring with me?

You are welcome to have a friend or relative to accompany you. However the department is not large and at exceptionally busy times you may be required to wait in the adjoining corridor. Please be assured this will not affect the time at which you are seen in the clinic.

What facilities are there at the hospital?

Addenbrooke's is a very large hospital with more than 1000 beds and over 9000 staff. In the main hospital concourse you can find the following amenities- bank, newsagent, general store, clothes shop, gift shop, body shop, hairdressers and solicitors, plus a variety of different food outlets around a general seating area. There are two ATM machines. In the outpatient department there is a further newsagents, cash machine and WRVS canteen.

Facilities

What if I can’t do the travel and appointment all in one day?

We can arrange accommodation at Pemberton House which is a room only guest house on the Addenbrooke’s site. Please inform us when making your appointment if you require accommodation as Pemberton House is very popular. For further information about help with costs for travel and accommodation please contact one of the nursing team.

Pemberton House (Frank Lee Centre)

 

How are we doing?

Friends and Family Test Summary

Your feedback is vital to us as we continue to increase the quality of our services.

Please feel free to send your feedback on our services to us

Alternatively you can send your feedback to the PALS team, who will gladly pass this on.

Anyone can share their individual experience and feedback about our services with the Care Quality Commission by phone, post or email – information about how to do this is available on their website.

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