Navigating your pathway
In this section...
Brainstrust really fills a niche in the 'market'. There is no other source of advice or information on navigating the Primary and Secondary Care systems and, most often, this is what patients need. Thank you!
Sarah, Hull, 2010
Your brain tumour treatment plan
The Neuroscience Multidisciplinary Team (MDT)
Your brain tumour treatment plan
We’re great believers in knowing the big picture, then you know what your options are. Equally, though, we know that not everyone wants to know about their diagnosis. Everybody has a different way of dealing with an illness. So this information is for you to use – or not. It’s up to you. And of course, even if you have made a decision, you can always alter course. Having a route mapped out doesn’t mean that you have to stick with it. Once your brain tumour has been diagnosed your case should be discussed at a multidisciplinary team meeting (MDT meeting). A key recommendation of the NICE* 'Improving Outcomes Guidance' is that:
The care of all patients with brain and other central nervous system (CNS) tumours should be coordinated through a specific model of multidisciplinary assessment and care:
- a designated lead in every acute trust
- a neuroscience brain and other CNS tumours MDT
- a cancer network brain and other CNS tumours MDT
- a key worker
As a number of options will be available for your treatment these meetings are very important and should be the minimum which you can expect. The MDT meeting will enable your case to be discussed by radiologists, neurosurgeons and oncologists. They will the best pathway for you.
Treatments will depend on the type and grade of brain tumour. The most common forms of treatment are:
- Watch and wait
- Drug therapy (chemotherapy, immunotherapy, gene therapy)
- Combined chemo/radiotherapy
- Best supportive care
Your treatment plan will either be radical and/or palliative:
Radical: In some cancers the intent is to cure. For brain tumours the aim is to stabilize the disease with best standard treatment which currently is a combination of radiotherapy and oral chemotherapy.
Palliative: The intent here is to relieve the symptoms when a cure is not possible. Sometimes it is better to look after the symptoms because to deal with the cause may be too damaging.
However, it would be nice to think that you might be included in these decisions too! So these are the things that you should consider, to make sure that your care pathway belongs to you and not the MDT.
- Your wishes regarding your treatment
- The type of tumour
- Where it is located
- The size of tumour
- The risks and potential benefits of available treatment options
- Your overall health
- Your age
- The type of healthcare services available and your ability to travel
- What other options are available outside your locality, even country
A typical plan might look something like this:
Healthcare professionals should have face-to-face communication with patients, their relatives and carers at critical points in the care pathway to discuss diagnosis, prognosis, treatment options (including no treatment), recurrence and end-of-life care. (NICE Service Guidance June 2006).
No doctor will ever be able to give you the definitive answer and don’t believe the doctor that promises you the earth. ‘Find the one who views your glass as being half full – and believes that with the best treatment you will do well’. Dr Peter Black: Living With a Brain Tumour.
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Second opinionsor even third, fourth fifth opinions
Patients and their families tend to respond to their healthcare practitioners in one of two ways. They either trust them implicitly and are very happy and confident that the advice they are receiving is the right advice, or they may be uncertain about the way forward, not feel overly comfortable with what they have been told and come away from consultations with more questions than they went in with. And these attitudes can change over time. The one thing I do know is that if we hadn’t sought second, third and even fourth opinions, our daughter would not be with us now.
You need to seek as many opinions as you feel are necessary – for you. That might be one, or it could be more. Then step back, look at the information you have and try to identify any headlines. Are two out of the three consultants you have seen recommending a way forward that differs from the third? If so, follow this lead. Find out more. Maybe seek yet another opinion to confirm or deny your current line of thinking. It may be that the first opinion was right after all, but how much better will you feel knowing that you did your research and that whatever decisions you make, were made with full knowledge. It is an informed decision and even if the outcome is not what was expected, you would not have changed your mind at that point. And it might be that your decision is not to make a decision; that’s still a decision.
So – how do you go about seeking more opinions? If you don't feel comfortable asking your consultant, ask your GP. But there are other ways in. If you are happy to go privately, then you don’t always need a GP referral, but you will need to know that the referral that you are seeking is a good one (brainstrust will pay for you to have a second opinion at one of the leading neurosurgical centres which supports our work). Ask your current consultant and don’t be afraid of upsetting them – they wouldn’t be doing their job if they couldn’t advise. Use the internet, talk to other people involved in the brain tumour community, talk to brainstrust and talk to your GP. You need to know that you have the best information so that the decisions you make (and that could be a decision not to make a decision) are informed and right for you.
Some key points to remember:
- Don't be worried about offending your doctor by asking for a second opinion. No competent doctor should be angry at this and if they are, then maybe they aren't the right doctor for you.
- At worst, obtaining a second opinion will be a waste of time - but the upside potential is huge. A concurring opinion can provide reassurance, comfort and certainty.
- You may have to travel some distance to get the right second opinion, so consider your ability to travel.
- The patient decides what to do. Risk and uncertainty can help the decision. There are no wrong and right opinions and decisions must be made on what is being heard at the time. If, in the future, the decision taken wasn't the right one - it was right, at the time it was made.
- Factors that could influence the decision could be potential outcome, quality of life and how risk averse the patient is. Whatever the decision, the patient will need support once it has been made.
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The Neuroscience Multidisciplinary Team (MDT)
The neuroscience MDT should review the case history and images and suggest a management plan which should be communicated back to the appropriate consultant. This plan might suggest referral of the patient for neurosurgical or oncological management or continuing care locally.
The neuroscience MDT should meet at weekly intervals to review all new patients and advise on the initial management of their disease in accordance with national cancer waiting times standards (NICE Service Guidance June 2006)
Staff working in multidisciplinary teams are likely to develop higher levels of knowledge, skills, expertise and experience because they share their thinking. This means that higher quality outcomes are assured. There will be a range of healthcare professionals at a MDT meeting, and at the moment the set up may be different in different geographical areas, depending on the resource available. There are still some patients in the UK who are being denied first line access to proven treatment but the outlook is changing with the opportunity for patients to receive appropriate treatment. I wish we didn’t have to say this, but it is the case and our experience shows that the quality of care pathway can vary hugely.
The best practice should look like this, so that you don’t become ‘lost’ in the system:
Brain and other central nervous system (CNS) tumours patient pathway
Core members of the neuroscience MDT include:
|Neurosurgeon(s)||A specialist neurosurgeon who spends at least 50% of clinical programmed activities in neuro-oncological surgery and is regularly involved in dedicated speciality clinics caring for these patients.|
|Neuroradiologist||A consultant radiologist with at least 50% of clinical programmed activities spent in the practice of neuroradiology.|
|Neuropathologist||Registered as a Neuropathologist or histopathologist and has specialist expertise in neuro-oncology..|
|Neurologist||A consultant neurologist with expertise in neuro-oncology, epilepsy or neuro-rehabilitation.|
|Oncologist||A clinical oncologist with a special interest in tumours of the CNS|
|Clinical nurse specialist||A nurse with specialist knowledge of CNS tumours and skills in communication|
|Palliative care||A healthcare professional (normally a member of the palliative care team) with experience and expertise in the provision of palliative care services for patients with CNS tumours|
|Neuropsychologist||A clinical neuropsychologist with a special interest in tumours of the CNS|
|Specialist allied health professionals (AHP)||Representative of AHPs, including occupational therapy, physiotherapy, speech and language therapy, dietetics and others as appropriate, who have knowledge and experience of dealing with the patient group, with responsibility for education and liaison with other local AHPs|
|Coordinators||An administrative post responsible for coordinating patient registration with the neuroscience MDT and data collection|
|Others as required||E.g. representatives from ward nursing, community palliative nursing, psychology/psychiatry and epilepsy nurse specialists|
For more information about some of these professionals have a look at our "Have you lost your way booklet".
The website you have prepared is impressive and very helpful to many of those struggling with their diagnosis and treatment.
Professor Roy Rampling, Glasgow June 2011
Resources used to write this information:
brainstrust patient/carer representative
Clinical nurse specialist
National Institute for Health and Clinical Excellence guidelines – Improving Outcomes Guidance Brain and CNS Tumours 2008
Living with a Brain Tumour (Peter Black) 2006
Fast Facts – Brain Tumors (Abrey and Mason) 2009
Primary Central Nervous System Tumors – pathogenesis and therapy (Current Clinical Oncology, Humana Press 2011
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Date published: 17-05-2009 Last edited: 21-10-2012 Due for review 21-06-2016