My clients tell me that just after their diagnosis of mesothelioma there are many questions that need answering. It's not always obvious who to ask or how to go about getting further information or even whether you can check if what you are going through is normal. Unless you know what services there are, you can't go looking for them. So this overview is intended to provide a general idea of who does what and where you can look for help.
Obviously, some of this will depend on what is available in your local area. It's easy to assume cities will have more services, but this hasn't always been my experience. I had had one client living in a gorgeous rural village who couldn't have had better services and care provided by a local hospice right from when he was diagnosed.
The Medical Who's Who
Consultant Respiratory Surgeon
The diagnosis of mesothelioma will have been given to you by the Consultant Respiratory Surgeon at hospital after various tests. Often you will then be put in contact with a Specialist Lung Cancer Nurse (LCN) around the same time. There will then be follow up appointments with the Consultant and treatments at the hospital. You may not always see the same Consultant, so do ask if you are unsure as to what part of your care they are responsible for and make a note of names and numbers so you can go back to them when you need to.
Lung Cancer Nurses
Lung Cancer Nurses or LCNs will be able to help you with information about your treatment, prescriptions and what to expect. They have both the expert knowledge about the condition and the understanding that nursing brings with it. You may meet your Specialist Lung Cancer Nurse at a clinic or in the hospital. Many of them are NHS staff, and some are "badged specialist nurses" such as those provided by Mesothelioma UK and Macmillan. Specialist nurses will be based in the hospital and go out into the community as well.
What your GP can do to help
The hospital will send a letter to your GP informing them of your diagnosis. Your GP is essentially responsible for your healthcare at home. This means that your GP will organise nursing help from the District Nurse or Specialist Care Nurse and they can refer you for other help if it is needed, such as physiotherapy or help with your diet if it is necessary. It is important for you to be open about symptoms, for example to what extent you have them or if they worsen or change. You should discuss this with your GP as they can prescribe different drugs which may help or confirm when you need further help from the hospital. If you need your GP outside of surgery hours (after 5 pm and before 8 am) then you should phone the out of hours service, which is 111 for England and Scotland and in Wales call NHS direct on 0845 4647.
Prescriptions for those with cancer are free, but you may need to fill in a form initially to qualify for this. Your GP can obtain this form for you if you have not already had it from the hospital.
The District Nurses Role
Whereas the GP looks after your healthcare, the District Nurse has charge of your nursing help in the home. They will assess what needs you have, change dressings, advise on nutrition, and specialist equipment. Where you want a family member to change dressings or help with an in situ drain, they teach them how this is done, ensuring everyone is comfortable with the role they will take on. After the first visit, they will then usually send a Community Nurse who is someone who works within their team.
If you have been in hospital for some time, then staff there or the GP should let the District Nurse know when you will return home so that they can arrange to visit you shortly afterwards to assess what needs you have.
If you start to have problems walking, breathing or moving, you may benefit from seeing a physiotherapist who can give you advice on exercises that can help with these symptoms. Your GP, District Nurse or Specialist Lung Cancer Nurse can arrange for an appointment.
Marie Curie Nurses
Marie Curie is a charity with trained nurses that look after those needing palliative care. When you have help from a limited number of family members, it can be very tiring for them. Marie Curie Nurses can come and sit with you during the night or part of the day to help those carers get their much-needed rest. Their services are free and can be obtained via your District Nurse or Community Nurse. They are in high demand, so discuss this with them as soon as possible if you intend to use their service.
Help With Symptoms
Lung Cancer Nurses confirm that everyone's symptoms vary. They stress that it is important to discuss whatever symptoms you have, as there are many ways in which they can help. This is not a time to keep quiet about them.
One big issue is usually around food and feeling sick. Treatment often has a hand in how you feel with this. It is essential that you keep your energy up and eat appropriately. If you cannot face eating anymore speak to your GP, District Nurse or LCN. If the problem continues, then they could refer you to a dietician for further advice. When nausea is a problem, there are several anti-sickness drugs available, so if one doesn't work, it's worth talking about this as another drug might make a difference. Your hospital doctor or GP can prescribe these drugs, so discuss it with them and your LCN.
Pain is another difficult symptom which you should discuss openly with your doctor, District Nurse and LCN if the painkillers you have are not working the dose or the prescription might need changing.
Breathlessness is often a problem, and your District Nurse or LCN can show you various positions that you can stand or sit in that might help alleviate the symptoms. There are Breathe Easy support groups all over the UK that you might want to consider attending. The British Lung Foundation coordinates these support groups, and they usually meet once per month. You can find your local one via their website www.blf.org.uk.
At some stage, you might want advice on your symptoms or treatment at a time when you can't speak to your doctor or nurse. Help is on hand at the end of a phone. Mesothelioma UK have a helpline manned by specialist nurses that can help you, a family member or friend. They can help you to deal with symptoms, tell you if something is normal, provide details of treatment or advise what help should be available to you. This is an excellent service that you shouldn't be reluctant to use, and I would advise that the number is kept on the directory of other numbers that can help you. A short phone call with them might be all it takes to put your mind at rest. It's a freephone number available Monday – Friday 8.30am – 4.30pm: 0800 169 2409.
Some symptoms can be helped by aids and equipment, such as a V pillow, pressure relieving cushions for sitting up, or walking aids. While hospital staff and your District Nurse can give you advice and suggestions, finding the right equipment has been difficult for some of my clients. The British Red Cross might be able to help you and give you ideas as to where you can source what is needed. They also rent some equipment. Their helpline number is 0344 871 1111, or their email is firstname.lastname@example.org.
Support For You and Yours
I cannot overestimate the help that is available from the various Asbestos Victim Support Groups that are around the country. They can assist you with initial financial support and ongoing emotional support. Various groups can be located via the internet or from your LCN. Often a support group will have specialist advisors that will visit you at home after diagnosis and complete your applications for benefits available as a result of the condition. This advice should always be taken because not all benefits relate to income. These advisors have a wealth of knowledge for you to tap into.
They also arrange support group meetings, usually once per month. These meetings are not just for those with the mesothelioma or lung cancer, but for family members too. The meetings are informal and friendly, giving you a chance to feel at ease amongst people who know what you are going through and can help you with their own experience or just be there to spend some time out with you. I've been to a few victim support meetings, and there's always a good vibe with friendships that have been formed through the group. Walking in the first time might need a bit of courage, but it will be worth it.
Anyone diagnosed with an asbestos related condition should take legal advice regarding whether they can claim compensation. Often you will hear this reiterated by a consultant at the same time as you receive the diagnosis and other health care professionals as you meet with them. You can make your civil claim at the same time as applying for benefits or lump sum payments. When a claim is successful, compensation comprises of an amount for the fact of your illness and amounts to reflect financial expenses or losses incurred as a result.
It is vital that you choose a solicitor with specialist knowledge of these claims because this area of law is complicated. Furthermore, you can expect a specialist lawyer to make arrangements to come and see you at home immediately and ensure that any legal fees would be payable by those paying compensation and not you. Advice on who to contact can be obtained via the support groups, your LCN or the Association of Personal Injury Lawyers website.
I hope that with the benefit of having advised so many clients with a diagnosis of mesothelioma that this is a helpful summary. Services will obviously vary from area to area and so when you want help you and your family should be able to ask for it and to chase it up again if you don't get it within the right timeframe.
This article has been written by Bridget Collier, a specialist mesothelioma solicitor from Fieldfisher. She has over 20 years' experience and specialises in claiming compensation for those with asbestos related diseases. She is an accredited Asbestos Solicitor with the Association of Personal Injury Lawyers.