Best Supportive Care Information for Patients & Families affected by a brain tumour diagnosis.

This booklet has been designed to provide information for you and your family. It includes answers to some commonly asked questions together with information about other resources that may be helpful.

What does best supportive care mean?

Best supportive care is treatment that is focused on managing symptoms & helping to keep you as well as possible. This treatment is given when there are no specific tumour treating options that we can use. Our aim is to treat any symptoms quickly. We know that the best way to do this is to ensure you have a team of health care professionals in the community who you can call on.

Who will support me in the community?

The resources available can vary depending on how services are set up in your local area. We usually refer to local district nurses, Community Macmillan nurses / Palliative care teams and ask your GP to support you. Another good source of support can be through your local hospice who can provide a range of services.
In the first instance the teams we refer to will contact you. Based on your needs, they will either provide you with a point of contact for you to call upon or arrange some regular visits. It is useful to speak to these teams even if you are unsure about accessing their support.

Who are the district nurses and how can they help?

District nurses have direct links with your GP. They are a team of qualified nurses who provide nursing care within your home. This may include physical care, administration of medicines, emotional and psychological support. They can also help in signposting you to other local resources. The district nurses will usually be health care professionals who visit on a regular basis. They also have links with the Community Macmillan / Palliative care services and work closely with them.

Who are the Community Macmillan Team/Palliative Care Team and how can they help?

Community Macmillan and palliative care teams are specialist medical/nursing teams who support patients with tumours, cancers and other long term health conditions. They focus on managing symptoms and also support during end of life care. They can help managing physical needs and symptom control. They also offer psychological and spiritual support in a holistic approach. They are a good source of information and will be able to signpost you to locally available resources.
Any support offered will be personalised to your specific needs following discussion with you and your family. This will depend on what is important to you.

What are hospices and how can they help?

Local hospices provide both outpatient and inpatient care and offer a range of support for patients with complex or life limiting conditions. What is available can vary within each unit. There will usually be a team of staff including consultants, specialist nurses, physiotherapist, occupational therapist, family support workers and social workers.
The kind of support offered includes symptom control, psychological and social support, complimentary therapies and end of life care. Many hospices also offer access to financial advice and hold many information resources.

Can my friends and family get any help and support?

We understand that a brain tumour diagnosis affects not only the person with the tumour but also those close to them. The specialist teams we have talked about can provide information and support for carers and families alongside patients. Accessing help by speaking to their GP is also important for family and friends. Local Support groups, Macmillan and brain tumour charities can also be a good resource.

Am I entitled to extra financial help/support?

Your diagnosis means you are entitled to claim benefits under the special rules. A form known as a DS1500 will be completed and sent to your GP. If you speak to your community team they will be able to help you use this form to access this financial support.

Will I be able to access my GP more easily now I have this diagnosis?

Patients often worry about being able to get the help they need at home from their GP and are keen to ensure that their family doctor is fully aware of their diagnosis. Once your GP receives a copy of your DS1500 form this will alert them to your need to access their help more easily. They will also receive a summary of information from your consultation at The Walton Centre. You will be placed on what GP’s call the Gold Standards Framework which means you can access their care more rapidly and should find it easier to get the support you need in the community.

What can I do to plan & make things as easy as possible for me and my family in the days ahead?

It can be very difficult to talk about what will happen as symptoms become more evident and the practical steps that need to be taken. Having these difficult conversations is helpful and can ensure your wishes are known. Some things that it might be helpful to consider and talk about with those close to you are:

• Setting up Power of Attorney — this means that the person or persons of your choice can make decisions about your care or finances if you are no longer able to do so.

• Advanced Care Plan — this is a document that sets down your preferences , wishes, beliefs and values regarding your care.

• Drafting a will — many charities offer this service. There are also resources and information online at www.gov.uk

What can I expect to happen at the end of life and what symptoms am I likely to have?

It can be very difficult to predict how symptoms will develop and what will hap-pen for each individual. This is because the brain is made of different parts (lobes) each responsible for managing different bodily functions. This means that as the tumour grows the area of affected brain will show symptoms in the part of the body it controls. Some common symptoms can include:

• Tiredness
• Stroke like symptoms/ limb weakness
• Speech difficulties
• Memory Problems
• Behavioural changes
• Headaches
• Seizures

Although not every patient will experience the same symptoms or deterioration it is very common to become more drowsy and less aware in the last days of life. Having the right support will mean any medication needed can be given to maintain comfort and keep symptoms under control.

Thinking about all of these things can be very difficult but we know that if you can talk openly with family and friends it makes it easier for everyone to access the support they need.

Other Resources that may help you

Weblinks
Braintumourcharity.org/living-with-a-brain-tumour/what to do-following-terminal-brain-tumour-diagnosis
Mariecurie.org.uk/help/support/publications

Literature
Brainstrust—End of Life Care booklet
Marie Curie—What to expect at the end of someone’s life

REFERENCES

Marie Curie: What is Palliative Care and What to expect at End Of life
WHO: WHO definition of palliative care
NHS: What end of life care involves
The Brains Trust End of Life Care
Specialist Organisations and Information
The Brain Tumour Charity
The Brains Trust
Macmillan Cancer Support
The Brain Charity
WWW.Gov.uk for making a will
Hospiceuk.org for more information on hospices and where to access their sup-port.