Transplants are not carried out in the RVH. Adult patients are normally referred to King’s College Hospital London ( https://www.kch.nhs.uk/) and children will be referred to Birmingham Children’s Hospital ( https://bwc.nhs.uk/birmingham-childrens-hospital).
In this situation we would ask that your refer to the local government guidelines who will offer advice on all aspects of travelling.
Covid 19 vaccination is safe for liver transplant recipients and all transplant recipients in NI have been offered vaccinations with the overwhelming majority taking up the offer. Therefore almost all liver transplant recipients in NI are now vaccinated. If you have not yet been vaccinated, the vaccine you will be offered will be suitable for your circumstances (age/underlying disease etc). All individuals on the waiting list for liver transplant will be offered accelerated vaccination (second dose after 3 weeks) to ensure they are adequately vaccinated at the time of transplantation.
Covid 19 vaccination is safe and effective for individuals with liver cirrhosis. There is clear evidence Covid 19 can be a very serious illness in individuals with underlying liver cirrhosis (up to 35% mortality risk in some groups). It is therefore important to consider taking up the offer of vaccination when you are offered it
Please refer to the general guidance available HERE which is continuously updated.
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 contact you by phone or email or,if you prefer, arrange someone to meet you.
- We provide limited 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, Birmingham Children’s Hospital or at any other transplant centre. 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.
If you have to go to hospital outside of N. Ireland for a liver transplant or liver-related treatment we can provide some financial support within strict and consistent criteria.
No! You do not need to be an RVH patient. The Liver Support Group supports anyone in Northern Ireland with any kind of liver condition. Please feel free to call us on 07737 718493 or email us at email@example.com.
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.
- The most convenient accommodation to Kings is in Listen Lodge on the hospital campus. While priority is given to patients/carers from Northern Ireland in Listen Lodge, there can be no absolute guarantee that rooms will be available. Please remember also that only one relative is permitted to accompany a patient. To book accommodation, phone Paul McKie (social worker) on 020 3299 4920 or contact him by email – firstname.lastname@example.org
- If Paul is unavailable, phone the NI patient travel team on 028 9536 3171 or 0300 555 0115. Emergency out of hours is 028 9044 2062 or,alternatively, please contact Kay on 07737 718493 or Jim on 07715 167837 for further assistance.
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 9536 3242 or 028 9536 3034 (Direct Line 0300 555 0166) or email Patient.email@example.com for the necessary form.
- Please keep receipts for accommodation and taxi travel to and from airports. These will be required to process your claim. Please note that a taxi service should only be used between the airport and hospital; all other travel should be undertaken using public transport. 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.
For adults travelling to Kings, or other transplant centres, 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 ( http://www.hscboard.hscni.net/travelfortreatment/), whose number is 0300 555 0116 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.
- Please contact The Keen Group on 020 8875 4972 or go online https://thekeengroup.co.uk/ to prebook (and pay by card) a taxi. Please remember to request your receipt. A driver will then meet you at the airport with a board displaying your name.
- In any case please make sure you have Bank of England notes with you (to be on the safe side – the average fare is approx £70.00 but the fare will depend on the time taken for the journey).
How do my relatives access information on finding their way around either hospital and who should they ask?
Kings College Hospital –
is in Camberwell in South East London. The Patient Advice and Liaison Service is in the foyer and their staff should be able to deal with any queries that you have during office hours. If you need further help please feel free to contact Kay on 07737 718493 or Jim on 07715 167837; both of whom are very knowledgeable on this transplant centre.
Birmingham Children’s Hospital-
is in Birmingham city centre and any staff on ward 8 will explain how to get around. There is a Tesco and Sainsbury express shop within 10 mins walk from the hospital and many options for eating also. Again, if you have specific questions please call Rachel on 07849 250183 who will be only too glad to help out as she has extensive experience of this transplant centre.
This will depend on how urgently you need a transplant. A lack of available organs will determine the length of wait time which largely depends on factors such as blood type, ethnicity and clinical need.
The length of recovery really depends on each individual person so its really difficult to advise on length of stay.
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 and is the only one organ that can renew itself. Having said that, there are many liver disorders and here are some of the most common –
- 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 Cholangitis (which destroys medium sized bile ducts within the liver)
- Primary Sclerosing Cholangitis (where the bile ducts progressively decrease in size)
- Haemochromatosis (iron overload)
- Wilson’s Disease (where the body cannot control copper levels)
- Biliary Atresia (causing an obstruction of bile flow in babies).
Having any of the above conditions could mean that your body will display certain symptoms and some of these are detailed below –
- 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 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.
It would be important that you contact your GP to have tests carriesd out should you feel it necessary. The liver is a very robust organ and that 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 can often become very ill very quickly.
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.
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.
The number of people awaiting transplants greatly exceeds the number of available organs. We always encourage those who can to become registered organ donors.
There are many ways inwhich you can become an organ donor. Thease are –
- log on to https://www.organdonation.nhs.uk/ , click the ‘Register’ button and complete the online form
- Call 0300 123 23 23
- 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.
Many people with pre-existing medical conditions find it difficult and expensive to acquire cover when travelling abroad. While not making any specific recommendations, the companies indicated below do offer cover for those with various medical conditions. Most will include cover if you are thinking of a “cruise” type holiday and many offer “medical equipment” cover as well.
If you know of other travel insurance companies that you have used, and recommend, please let us know and we will add them to this list.
|Insurance Comapny||Phone Number||Website|
|Insurancewith||0333 999 2679||https://www.insurancewith.com/|
|J D Travel Insurance||0344 247 4749||https://www.jdtravelinsurance.co.uk/|
|Ask about insurance||Web based only||http://www.askaboutinsurance.info/|
|Freedom Travel Insurance||01223 446914||https://www.freedominsure.co.uk/|
|The Insurance Surgery||0800 083 2829||https://www.the-insurance-surgery.co.uk/|
|Staysure Travel Insurance||0808 168 6776||https://www.staysure.co.uk/|
|All Clear Travel||0800 848 8608||https://www.allcleartravel.co.uk|
|Media Travel Insurance Services Ltd||0151 334 2600||https://www.worldwidetravelplan.co.uk|
|Avanti Travel Insurance||0800 888 6195||https://www.avantitravelinsurance.co.uk|
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.