Porphyria Clinic King’s Information for patients and relatives What is porphyria? The porphyrias are a group of mainly inherited diseases of the pathway that produces haem, which is the red blood pigment, found in haemoglobin that carries oxygen around the body. There are seven different types of porphyria. They are very rare and usually cause either skin problems or episodes of pain. Cutaneous porphyrias are triggered by exposure to sunlight and lesions are visible on sun exposed parts of the body such as hands, legs and face. Skin symptoms associated with PCT can also arise from alcohol, exposure to oestrogens from hormone replacement therapy and increased absorption of iron in to the body. The acute porphyrias cause pain and are: acute intermittent porphyria (AIP), variegate porphyria (VP), hereditary coproporphyria (HCP) and ALA-dehydratase deficiency (ALAD). The cutaneous (skin) porphyrias are: porphyria cutanea tarda (PCT), erythropoietic protoporphyria (EPP) and congenital erythropoietic porphyria (CEP). These cause photosensitivity, which is burning, itching and blistering of the skin. Patients with VP and HCP can also present with these symptoms. How is porphyria treated? If you have one of the acute porphyrias the main symptom of an acute attack is pain and strong pain killers are usually needed (www.porphyria-europe.com). It is important to withdraw any factors that may have triggered the attack and maintain a high carbohydrate intake. For a severe attack there is specific treatment called haem arginate (Normosang®). For cutaneous porphyrias the best advice is to avoid direct sunlight and cover arms and legs when going out during the day. What causes symptoms of porphyria? Most patients with an acute porphyria never have any symptoms (~90% males and 50% females). Symptoms of acute porphyria are triggered by exposure to some drugs, alcohol, illegal drugs, dieting, stress, infection and hormonal changes in women. Why come to the Clinic? The Clinic can give advice on treating and living with porphyria. We can also help diagnose porphyria accurately and test other family members to see if they have also inherited it. 1 Clinic Times: Monthly. Monday afternoons 2 – 5pm and Thursday mornings 9am – 1pm. The Clinic is in the Haematology Outpatient Department situated in the Cheyne Wing on the ground floor at King’s College Hospital, Denmark Hill. After your consultation the Doctor may order some blood tests and ask you to go the Phlebotomy Clinic in the Golden Jubilee Wing. For patients with porphyria a follow up appointment will then be sent to your home address. Please contact the Clinic Secretary as soon as possible if this appointment is not convenient. Who works in the Clinic? The Clinic is run by a Consultant with specialist knowledge of porphyria, a Clinical Nurse Specialist and a Clinical Scientist from the Porphyria Laboratory, Department of Clinical Biochemistry. Valuables Please do not bring in valuable, jewellery or large sums of money and keep all personal property with you at all times. The Hospital cannot accept liability for the loss of items. Clinic Attendance It is very important to attend your Clinic appointment but if you cannot make your appointment please telephone 020 3299 4181 as early as possible and make another appointment with the Clinic Secretary. Students attending the Clinic King’s trains many medical and nursing students and they may be present at the Clinic. This is a very important part of their education, as they must gain practical experience in the care of patients. We hope that you agree to their presence, but if you do not wish students to be involved at any stage, then please tell the Doctor. What happens at the Clinic? When you arrive at the Clinic please report to the reception to check in. You will be asked to sit in the waiting area until you are called by name to see the Doctor. 2 Patient Advice and Liaison Service (PALS) The Patient Advice and Liaison Service (PALS) is a service that offers support, information and assistance to patients, relatives and visitors. They can also provide help and advice if you have a concern or complaint that staff have not been able to resolve for you. The PALS office is located on the ground floor of the Hambleden Wing, near the main entrance on Bessemer Road - staff will be happy to direct you. Clinic Contacts: Haematology Outpatient Department 020 3299 3334 Porphyria Clinic Secretary 020 3299 4181 Porphyria Consultant Secretary 020 3299 3242 Sharing your information We have teamed up with Guy’s and St Thomas’ Hospitals in a partnership known as King’s Health Partners Academic Health Sciences Centre. We are working together to give our patients the best possible care, so you might find we invite you for appointments at Guy’s or St Thomas’. To make sure everyone you meet always has the most up-to-date information about your health, we may share information about you between the hospitals. Tel: Textphone: Fax: Email: 020 3299 3601 020 3299 1878 020 3299 3626 kch-tr.PALS@nhs.net Other useful contacts and website addresses The British Porphyria Association (BPA) Help-line: 01474 369231 Email: helpline@porphyria.org.uk www.porphyria.org.com Care provided by students King’s is a teaching hospital where our students get practical experience by treating patients. Please tell your doctor or nurse if you do not want students to be involved in your care. Your treatment will not be affected by your decision. European Porphyria Network (EPNET) www.porphyria-europe.com 3 How do I get to King’s College Hospital? and principal stops in south-east London such as Bromley South, Catford, Lewisham and Peckham Rye. There are temporary stairs until at least summer 2012 when lifts to all platforms are due to open. For the most up-to-date information about travelling to and from King’s, visit our website: www.kch.nhs.uk/patientsvisitors/ getting-to-kings Loughborough Junction station is about a 12-minute walk from King’s and has about 30 steps to the platforms. It is served by direct trains to central London, including Blackfriars, Elephant & Castle, Farringdon and King’s Cross, as well as Luton and Bedford to the north and Wimbledon, Sutton, Gatwick and Brighton to the south. Check your journey details at Transport for London, www.tfl.gov.uk/ By car We advise you to use public transport to get to King’s as there are few parking spaces close to the hospital and we cannot guarantee a space will be available. The main car park is on Caldecot Road and costs £2.50 per hour or part hour. If you can only travel here by car, please allow plenty of time to find a parking space when you arrive. There are 20 marked spaces for registered disabled drivers across the hospital site. There is no charge for parking in these spaces. The nearest underground stations are Elephant & Castle and Brixton. Both are some distance from the hospital so you need to complete your journey by bus. By bus Bus numbers 35, 40, 42, 68, 176, 185, 468 and 484 stop directly outside the hospital. In addition, many other services stop a short walking distance from the hospital in Camberwell Green and Coldharbour Lane. By train The nearest train station is Denmark Hill, which is about a five-minute walk from the hospital. It has regular services direct to central London, including Blackfriars, St Pancras, London Bridge and Victoria, as well Bedford and Luton to the north 4 Where is the Haematology Outpatient Department? The Haematology Outpatient Department (HOPD) is situated in the Cheyne Wing on the ground floor at King’s College Hospital, Denmark Hill. Enter the Hospital through the main entrance (Hambledon Wing), walk down the main corridor and turn right at the lifts. Walk along the corridor and you will find HOPD on your right. If you would like this leaflet in a different format or language please contact our Patient Advice and Liaison Service (PALS) on 020 3299 3601. www.kch.nhs.uk PL545.1 March 2012 Corporate Comms: 0362 Review date March 2015