Personalised care and support planning involves a conversation with one of the Cancer Support Team about your health needs or concerns in relation to your cancer. 

From this conversation a plan will be made with you to ensure the support you can access and receive is personalised to you. 

You will be offered to complete a ‘What Matters to Me – My Cancer Personalised Care and Support Plan’ around the time of your diagnosis, during or after treatment, or as you need it.

Your ‘What Matters to Me – My Cancer Personalised Care and Support Plan’ may address things such as:

• Physical concerns like tiredness, appetite changes, moving around. 
• Emotional concerns like worries about the future, feeling a lack of control.
• Practical concerns like sorting out housework and finding out where to get equipment that can help.
• Family or relationships concerns: like partner or children, person who I look after or looks after me.
• Spiritual concerns like how your faith or spirituality may impact your experience.

Your Clinical Nurse Specialist, Cancer Support Worker or the Macmillan Wellbeing Centre at Southmead Hospital can help you to find the information and support that you may need. 

This could include help with:

• Physical wellbeing.
• Emotional and psychological support.
• Coping with side effects.
• Advice about money, welfare, and benefits.
• Getting back to work.
• Making healthy lifestyle choices.

A Cancer Care Review is a discussion between you and your GP or Practice Nurse about your experience with cancer, to find out if there is anything your GP practice can help you with. 

The Cancer Care Review will take place within 3 and 12 months after diagnosis and might involve:

• Talking about your diagnosis, current needs, and any worries that you may have.
• Planning any extra support that you might need.
• Reviewing your medication.
• Giving you access to other services that you may need.

If you have concerns at any time during or after your cancer treatment, your GP or practice nurse can help.

Following treatment, you should be given a Treatment Summary. The Treatment Summary includes information about:

• Your diagnosis.
• The treatment you had.
• Follow-up arrangements.
• Possible long-term effects or complications.
• Signs and symptoms to look out for.
• Who to get in touch with if you need support.

Your GP will also be sent a copy of your Treatment Summary, this will help with your Cancer Care Review.

After your treatment ends, your cancer support team will discuss with you the plan for your follow-up care. They will let you know about any tests or investigations you might need. How often you have these tests will depend on the type of cancer and treatment you have had.

There are different ways of having your follow-up care, such as: 

• Appointments with a consultant or specialist nurse, either face-to-face, by phone or by video consultation.
• Supporting you to self-manage with support from your cancer team, sometimes known as supported self-management. Supported self-management enables you to be more in control of your care, you can always contact your cancer support team for help or to arrange an appointment when you need it. You will be provided with information about symptoms to look out for and ways to keep healthy.

If you have any side effects from your chemotherapy, radiotherapy, or immunotherapy treatment or feel unwell, please call: 

North Bristol NHS Trust:

• Southmead Acute Oncology Service on 07860 783116 Mon - Fri 08:00 - 17:00.  
• Outside of these times, call the Clinical Hub on 0117 414 0700.

United Hospitals Bristol and Weston Foundation Trust

• Bristol Haematology and Oncology Centre on 0117 342 2011 available 24 hours a day, every day.
• Outside of Monday to Friday 08.00 - 17:00 calls are directed to the switchboard who will contact the on-call doctor.

If you want to find out more or have not been offered a service described in this information, please talk to your Clinical Nurse Specialist or the staff at the Macmillan Wellbeing Centre. They can help you to get the support that you need.

If you would like to: 

• Send a thank you or offer a compliment, visit How to say thank you and offer a compliment | North Bristol NHS Trust
• Raise a concern or complaint contact our Patient Advice and Liaison Service (PALS) for help.

The National Cancer Patient Experience Survey aims to understand the experiences of cancer care across England. Your views will help to improve the quality of cancer services in the NHS.

This annual survey asks detailed questions about your experiences throughout your cancer treatment. If you receive a survey, please complete it and give honest feedback about your experiences.

Find out more about the National Cancer Patient Experience Survey: Tell us about your experience of cancer care - National Cancer Patient Experience Survey (ncpes.co.uk)

This survey is for people in England who have had a cancer diagnosis. People are invited to complete the survey around 18 months after diagnosis.

The survey aims to find out how the quality of life may have changed for people diagnosed with cancer. We want to see where care is working well or not so well, and if any new services are needed. The survey helps us compare answers of how people who have experienced cancer are feeling about their cancer diagnosis and treatment. This will help us to improve the way we support people to live as long and as well as possible.

A company called Quality Health sends out survey invitations and collects answers to the survey. Find out more about the Cancer Quality of Life Survey: Cancer Quality of Life Survey - About the Survey (england.nhs.uk)

For some people there are medical reasons why one type of dialysis treatment is definitely better. For example if you have had abdominal operations in the past peritoneal dialysis may not work. For most people either type of dialysis would provide good treatment and the type you are on should depend upon what most suits your lifestyle. If you do not understand why you are on the type of dialysis you are on then you should ask one of the doctors or nurses to explain.

For some people there are medical reasons why one type of dialysis treatment is definitely better. For example if it is not possible to form a fistula (vascular access) you might be better off on peritoneal dialysis. For most people either type of dialysis would provide good treatment and the type you are on should depend upon what most suits your lifestyle. If you do not understand why you are on the type of dialysis you are then you should ask one of the doctors or nurses to explain.

Between dialysis treatments toxins build up in the blood and these will eventually make you unwell. The more often you have treatment the easier it will be to control the toxins. For most people the minimum frequency of dialysis that will keep them well in the long term is 3 times a week. Some people who do dialysis at home have shorter treatments upto 6 times weekly and feel better on this more frequent treatment. Unfortunately it is not possible to organise dialysis more than 3 times a week in a dialysis unit.

Normal kidneys are working all day every day. When doing dialysis we are trying to fit in the same amount of work in a much shorter time. For most people 12 hours of dialysis per week (3 sessions of 4 hours) is the minimum needed keep them well. We do regular measurements of the amount of toxins the dialysis machine is removing from your body during treatment and may adjust your dialysis time to ensure you get enough treatment. In reality very few need less than 4 hours and often more is needed.

The answer to this is different for different people. For some people the toxin levels in the blood build up very rapidly between treatments and if a dialysis treatment were missed the toxins and fluid could reach a point where they made you very unwell and could potentially be fatal. More commonly the toxin levels and fluid build up more slowly and the body can cope if you miss a single dialysis treatment. Missing more than one treatment in a row is always dangerous. Frequently missing a single dialysis will mean that you do not receive enough treatment in the long run and this will eventually affect your health. It is unwise to miss any dialysis treatment without discussing it with your doctor in advance.

Dialysis should not usually be missed without medical monitoring. If you feel ill before a dialysis treatment and don't know if you can make it in for treatment then you should ring your dialysis unit for advice. They will try to find a way of getting you in.

Like all treatments dialysis has possible complications. Modern dialysis machines have many monitoring devices to try and detect any complications before they cause real problems. The nurses will also monitor the machine and your blood pressure to detect any areas for concern early. The most common complication during treatment is the blood pressure dropping which can make you feel faint or sick. Some patients learn what this feels like and can call for help from a nurse before they become very unwell. The nurses are trained in how to correct this complication rapidly.

Peritoneal dialysis also has some complications. The most well known is peritonitis which happens when infection gets into the dialysis fluid. You will be told what to do if peritonitis is suspected during the dialysis training. Other complications include failure of the fluid to flow in and out of the tube and constipation.

Kidneys are vital to many functions of the body and when they fail different medications are needed to manage the problems that arise. Dialysis treatment can take over many of the functions but not all and so medication is needed in addition to dialysis to keep the body systems working well. As more scientific evidence becomes available more and more medications are found to extend or enhance the life of people with kidney failure and for many people the list of useful drugs is very long. With any new drug that might be suggested for you the doctor will consider the benefits and possible side effects. This should be discussed with you before anything new is prescribed. Your doctor will also consider if there are any important interactions with the drugs you already take before advising anything new. If you are concerned about any of your drugs then discuss this with your doctor or nurse.

Diet is very important for people with kidney failure. It is very important that you eat sufficient protein and calories. Because of this we try to keep any restrictions to your diet to a minimum. Everyone’s needs are different and some people will need particular diets for example for potassium or phosphate. A dietician will talk to you about what would be the best diet to keep you well. The dietician will see you if they pick up any problems from the regular blood tests that you have but if you have any concerns then please ask to see a dietician and it can be arranged.

Kidney transplantation is good treatment for many people with kidney failure but like all treatments there are risks as well as benefits. For quite a lot of people with kidney failure the risks of having a kidney transplant outweigh any benefits and so they are not on the transplant waiting list. You and your doctor will decide if kidney transplantation would be good treatment for you and if you should be on the waiting list. If you are not sure what is best for you or whether you are on the list then ask your doctor.

The only definite way to get a kidney is through a live donor. If you do not have a suitable live donor then you will go onto the deceased donor waiting list if you and your doctor think it would be good treatment for you. The transplant waiting list is more of a lottery than a conventional waiting list because who gets a kidney depends on matching to the tissue type of people who have donated their kidneys. Occasionally people get kidneys within a few days of going onto the list. Others could have to wait for years or never get a kidney. On average people wait 2-3 years.