FAQ

Q. How can the Support Group Help?

The RVH Liver Support Group strives to provide support at any time to liver patients, their families and their carers throughout Northern Ireland.

* We offer free and confidential non-medical advice and understanding

* We provide a listening ear, whether you need one phone call or long term support

* We can phone, write or, if you prefer, arrange someone to meet you.

* We provide financial assistance in certain circumstances.

Most of the group’s committee have either received liver transplants themselves or cared for those who have.  They understand the practical and emotional implications of waiting for and recovering from surgery at King’s College Hospital in London or at Birmingham Children’s Hospital.  They also understand what life is like for patients with liver disease across Northern Ireland.

Please don’t think anything is too trivial; if it matters to you, it matters to us.

Make just one call to 07737 718493 and you will be directed to the person best suited to talk to you.

Q. Do I need to be a patient at the Royal Victoria Hospital to get help from the Group? 

No. The Group works throughout Northern Ireland.

Q. Can the Liver Support Group provide financial help?

If you have to go to hospital in England for a liver transplant or liver-related treatment we can provide some financial support, within strict and consistent criteria.

Q. What does the liver do?

The liver is a vital organ which performs many complex functions e.g.

* fighting infection;

* dealing with poisons and drugs;

* filtering and cleaning the blood;

* controlling cholesterol levels;

* producing and maintaining the balance of hormones;

* producing the chemicals responsible for blood clotting and tissue repair;

* processing digested food;

* producing bile to break food down;

* storing energy;

* storing sugar, vitamins and minerals.

It is the largest solid organ in the body.  It is the one organ that can renew itself.

Q. What can go wrong with my liver?

There are over one hundred liver disorders. Some common types are:

* hepatitis (inflammation of the liver)

* cirrhosis (scarring of the liver)

* gallstones (which gather wherever there is bile, usually in the gall bladder),

* Non-alcoholic fatty liver disease (NAFLD)

* Cancer of the liver

* Primary Biliary Cirrhosis (which destroys medium sized bile ducts within the liver)

*Primary Sclerosing Cholangitis (which the bile ducts progressively decrease in size)

* Haemochromatosis (iron overload)

* Wilson’s disease (where the body cannot control copper levels)

* Biliary Atresia (causing the obstruction of bile flow in babies).

Q. What are the signs and symptoms of liver disease?

Typical signs include:

* fatigue and weakness

* nausea and vomiting

* loss of appetite

* weight loss

* itchy skin

* jaundice (discoloured skin)

* pain in the abdomen (right upper quadrant).

The liver is a very robust organ.  This means that sometimes it is in poor shape well before the patient is aware that anything is wrong.  Symptoms often take their time before revealing themselves, so patients often become very ill very quickly.

Q. Do patients become confused?

The liver may become damaged to the point where it cannot remove waste products.  These are then carried to the brain.

When this happens, symptoms range from minor memory lapses, slurred speech and confusion to – in severe cases – unconsciousness.  This is known as hepatic encephalopathy.

Q. Is cirrhosis only caused by alcohol abuse?

NO.

It is a popular misconception that cirrhosis only affects people who drink too much alcohol over the years. Cirrhosis has many causes and affects children, as well as those who drink little or no alcohol.  However, alcohol abuse is a common contributory factor.

Q. If I need a liver transplant can this be done in Northern Ireland?

No.

Patients are referred to England, usually to Kings College Hospital in London, or in the case of children, to Birmingham Children’s Hospital.

Q. How long will I have to wait for my transplant?

This will depend on how urgently you need a transplant.  A lack of available organs means that you are very unlikely to receive a transplant immediately after you are told that you need one.  On average, adult patients wait 138 days while children wait an average of 92 days.  Waiting time largely depends on factors such as blood type, ethnicity and clinical need.

Some people are placed on a priority list depending on their clinical need which means a shorter waiting time.

You will need to go to Kings College Hospital to undergo assessment for suitability for transplant surgery.

If the team at Kings consider you to be a suitable candidate you will be placed on the transplant waiting list.

Q. How long will I be in hospital?

This varies greatly depending on your recovery rate. Twelve to twenty one days is normal.

Q. Who will pay for my trip?

For adults travelling to Kings, the Health Boards in NI will pay for the patient’s travel and for that of one carer. Travel forms, which you will need to sign, must be completed by the doctors in advance.

For children and families travelling to Birmingham, Patient Travel (028-90639029) will arrange flights for the patient and parent(s). A taxi is arranged by Birmingham Children’s to go from the airport to the hospital, you may need to ring the ward with your flight arrival time.

Q. How will I get to Kings?

Usually patients are able to travel to London by scheduled flights. In situations where a patient is too ill to fly, the patient and one carer will be taken to Stansted by air ambulance.

Flights will all be arranged for you.

Q. How do I get from Heathrow to Kings?

* Phone The Keen Group (previously Dulwich Cars) on 020 8693 1000 or Metro Cars on 020 7720 1010 – if possible before you leave Belfast.  Leave your name and flight number and give details of the number of passengers and the number of bags that you have with you.  A driver will then meet you at the airport with a board carrying your name.

* If you cannot phone before leaving, phone from the airport and allow about half an hour for the car to reach you.

* Make sure you have £100 in English money with you (to be on the safe side – the average fare is £54 but the fare will depend on the time taken for the journey).

Q. Where will my relatives stay?

* The most convenient accommodation to Kings is in Listen Lodge on the hospital campus.  While priority is given to patients from Northern Ireland in Listen Lodge, there can be no absolute guarantee that rooms will be available.  To book accommodation, phone Paul McKie (social worker) on 020 3299 4920 or contact him by email – paul.mckie@nhs.net

* If Paul is unavailable, contact liver transplant co-ordinators and ask them to check if there are available rooms in Listen Lodge. To contact co-ordinators, phone the KCH switchboard – 020 3299 9000, press 4, and when the automated reply asks who you wish to speak to, say ‘liver transplant co-ordinator’.

* If accommodation in Listen Lodge is not available, there may be rooms in the William Booth College; about 5 minutes walk from the hospital.  The college allows 2 ‘hospital guests’ at any one time, with a maximum stay of 7 days. They need email confirmation from the hospital that you are related to someone under their care whose condition is an ‘emergency’ – transplant surgery counts as an emergency.  Contact the college on 0207 326 2700.

* If neither Listen Lodge nor the Booth College is available, the liver transplant co-ordinators may be able to direct you to Bed and Breakfast accommodation elsewhere.

Where will the family stay?

For families travelling to Birmingham – one parent can always stay at the bedside of your child and if both are staying, there will usually be a room available at the Ronald McDonald house next to the hospital. If it is full you will be put on the waiting list and given a room as soon as possible. If there is no alternative you can book a hotel room, which will be covered by patient travel up to an amount of £85 a night. Ward 8 will be able to suggest hotels they use regularly. You will be sent travel reimbursement forms from Patient Travel and will be able to claim retrospectively. Expenses for meals will be reimbursed at a rate of £15 per day.

Q.  If my relatives need to know anything about finding their way round the hospital or the surrounding area, who should they ask?

Kings College Hospital is in Camberwell in South East London.  The Patient Advice and Liaison Service is beside the foyer and their staff should be able to deal with any queries that you have (during office hours).   There is a convenience store within 10 mins walk from hospital and a Sainsburys store within 20 mins walk.  There are plenty of places to eat nearby (both sit-in and take away).

Birmingham Children’s Hospital is in Birmingham city centre and any staff on ward 8 will explain how to get to the Bullring. There is a Tesco and Sainsbury express shop within 10 mins walk from the hospital and many options for eating also.

Q. How does my relative claim expenses when we return to Northern Ireland? 

The Health and Social Care Board will reimburse all reasonable expenses for one relative’s stay at King’s. On returning to Northern Ireland -

* Contact the Patient Travel Officer on 028 95 363242 or 028 95 363034 (Direct Line 0300 555 0166) or

email Patient.travel@hscni.net for the necessary form.

Please keep all receipts for accommodation and necessary travel when in London.  Always ask for a receipt if travelling by taxi.  Showing receipts will make it much easier to process your claim.  Expenses for meals will be reimbursed at the rate of £15 a day.  It is not necessary to keep receipts for food.

Claims must be made within 3 months of your return to Northern Ireland.  If your stay is longer than 3 months, please submit your first claim at the 3 months stage.  A further claim or claims can be made afterwards.

Q. What is the NHS Organ Donor Register?

This is a confidential computerised database holding the names of 23.6 million people across the UK (36% of population) who have decided that they wish to donate their organs should they ever die in circumstances where this was possible.  This is an increase of 1.1million people on the NHS Organ Donor Register in one year (2016-2017), and an increase of 4.9 million over the past five years.

As of October 2017, 734,366 people from Northern Ireland were on this register – roughly 40% of the population.  Numbers on the register in Northern Ireland have been rising steadily since 2011 and the increase in numbers in that time is amongst the highest amongst the regions of the UK.

Q.  Are there enough people on the register?

Unfortunately not.

The number of people awaiting transplants greatly exceeds the number of available organs.

Q. How can I become an organ donor?

Log on to www.organdoantion.nhs.uk , click the red ‘Register now’ button and complete the online form

OR

Phone 0300 123 23 23

You can also sign up when renewing your driving licence – 58% of registrations in the UK last year (2016 -2017) were through the Driver and Vehicle Licensing Agency (DVLA).

In so doing you will join a group of over 734,000 willing donors in Northern Ireland.

Please remember, though, that as well as joining the register it is vitally important that you tell those closest to you that you wish to be an organ donor.

Q. Do people with liver disease have difficulty obtaining travel insurance?

Many people with pre-existing medical conditions find it difficult and expensive to acquire cover when travelling abroad. While not making any specific recommendations, feedback tells us that the following companies have favourably treated our members in the past.

*Insurancewith:

Phone 020 3829 3875 Website address: www.insurancewith.com

* J D Travel Insurance Consultants:

Phone 0344 247 4749   Website address: www.jdtravelinsurance.co.uk

* askaboutinsurance:

Online contact only     Website address: – www.askaboutinsurance.info

* Freedom Travel Insurance:

Phone 0870 7743760.    Website address: – www.freedominsure.co.uk

* The Insurance Surgery:

Phone 0800 8496444.   Website address: – www.the-insurance-surgery.co.uk

* Able2Travel

Phone 01892 839 501   Website address – www.able2travel.com

* The Post Office:

Contact your local branch.

BUT..please remember!

You must answer all questions about existing medical conditions fully and honestly.  If you need to make a claim and have left anything out that the company needs to know, your claim may not be successful.