s King’ Porphyria Clinic Information for patients and relatives

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
[email protected]
Other useful contacts and
website addresses
The British Porphyria
Association (BPA)
Help-line: 01474 369231
Email: [email protected]
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