Supportive Care

Introduction

If you or a family member has been diagnosed with a brain tumour it will be a difficult time. 
What is important is that you should feel supported and well informed to help you share in decisions about your care. 

Below is information available from the NHS and from a variety of charities which may be useful and enable you to have more sense of control. 

Living Well

Whatever your outlook from a brain tumour it is important that you live life as well as you can while dealing with the diagnosis. This section shows some of the common symptoms which can make life difficult with advice on what may be helpful.  

Practical Tips

Just knowing where to go, who to ask, or what to click on can help with a sense of owning a problem and giving back control. This information with the links will help you to live your life better with a brain tumour.  

Taking Control

Within the sense of loss of control there is much that can be reclaimed. These links can help you to regain control in those areas where it is possible, and to support you to make good decisions about all aspects of your brain tumour journey, based on good and reliable information.

What professional specialist support is there in NHS Scotland? 

In addition to the nurses, surgeons and oncologists who may be involved in your care, there are specialists who deal specifically with the impact of brain tumours.    
  
Neuropsychology – the neuropsychologists will assess how your tumour is affecting the way in which your brain works. This will include specific tests. These may be done before, sometimes during, and sometimes after you have had a brain tumour operation.  This can help to guide your surgery and give your team useful information on the impact of your tumour.     

In slow growing brain tumours surgery might not get done immediately at diagnosis.  Doing these tests can help to show whether the tumour is starting to cause more problems over time.  This will guide treatment decisions for you.   

Neuropsychologists are a small group of professionals in Scotland so their expertise is not widely available, but every team will have some access to this expert input.   

Neurorehabilitation – there are also NHS specialists in neurorehabilitation.  Their focus is to help you set goals for recovery after brain surgery or damage from a brain tumour.  They can provide expert advice on what approaches may be useful to work towards your recovery.  In some cases, this may include a stay as an inpatient in a neurorehabilitation unit.  The specialists in neurorehabilitation and the inpatient facilities are both limited resources. Every brain tumour centre will have some access to support.  You should discuss with your team whether this will be helpful for you.  

Outcomes of Treatment

Survivorship – there is a cure for some brain tumours. Some people may live a long time without a cure but with the tumour under control.  The impact of the tumour and the treatment can have lasting effects on how you live your life.  

For the challenges which come with the longer term it may be helpful to access information on survivorship.   

End of life care – if your brain tumour means that your survival is shortened then you and your loved ones may want to plan and be able to prepare.  It is important that you are supported in making decisions about what care you wish and how this should happen.