brainstrust

Have you lost your way?

Don't know which way to turn? This guide may help you get back on track...

Please note: This information is based on our personal experiences and circumstances may vary from region to region. The golden rule – keep records of everything. You will find that you (or someone who is prepared to take on this responsibility) will need to take on a 'management role'. It is a bit like conducting an orchestra – everyone has a part to play, but not at the same time, other wise it becomes chaotic. This will just add to your anxiety and frustration. We have found that it has been pretty much left to us to orchestrate things – make appointments, ask to see people, ask questions, find out who is out there who can help. We weren’t even told, for example, that Meg is entitled to free prescriptions. Here are the people who are very much involved in Meg’s care and who have helped us.

A who's who guide to who can help

Even before a diagnosis is reached, several people may already have become involved with your situation. You would hope that everyone talks to everyone else, but it isn't the case. Most liaison is still done through letters. Whilst this may be archaic it does actually work in the patient's favour, because it means you can have copies of correspondence for your records. Ask for this at the outset. Some practitioners provide this information as a matter of course; others you may need to request it. Keep everything filed, in chronological order. This will enable you to keep your case history at your fingertips. We take this file with us to all appointments, because invariably the consultants haven't got the notes (they are somewhere else) or they haven't always read them prior to the appointment. We also have copy scans (about £30 a set – with your doctor's permission), again filed in chronological order. I have been labelled the scary mum, but when it is your child whose back is against the wall, you don't really care.

Your GP

The most valuable of all of these people will be your GP. This person is your port of call for those moments when everything seems to be stacked against you. This is the person who will fight your corner for you. They won't be an expert on brain tumours but they are an expert on patient care and will have your interests at heart. So it is important to keep them updated with what is going on and for them to hear it from your point of view. They will remain objective and make an excellent sounding board if you are trying to decide what to do. Our GP frequently plays devil's advocate with Meg to make sure that she is certain about the choices she has made. We try to see Meg's GP at least three times a year for twenty minutes, with no agenda other than to touch base and chat about how things are. This is over and above any other appointments that may arise.

The consultant neurosurgeon

This is the person who deals with the cause. In an ideal world the neurosurgeon will liaise with everyone else and vice versa, but remember that you are just another patient in a day that is full of a huge and varied case load. So be prepared to update them on what has been happening, how you feel and what medication you are taking. Don't be afraid to ask for a second or third opinion. A good neurosurgeon will willingly recommend another consultant if you ask. Sometimes they may come across as being quite dispassionate, but they are really listening to what is being said. Don't expect them to wave a magic wand - there isn't one. In the early stages we left these appointments feeling very frustrated and no further forward - that is OK. It took us 18 months to understand and, more importantly, accept, that they don't have all of the answers.

The consultant neurologist

This is the person who deals with the symptoms. Pretty much the same applies to this person as it does to the consultant neurosurgeon. They will liaise with each other, but if you can imagine this liaison happening for every patient, with letters flying to and fro, inevitably you will not feel that perhaps your notes have had the attention they should have done. In fact, we have been to consultations where there are no notes, so always take your own file. It is very important to keep a diary of symptoms and to log the different ways your tumour is affecting you. We have tried hard to find patterns in the symptoms but there are none. And just when you think you have it sorted, your tumour will find another weasily ways of manifesting itself. Remember though that not every headache or bout of nausea that you may have may be down to the tumour. You may just have a bug. But it is important to let your neurologist know.

The consultant radiologist

This person 'reads' your MRI scans. Whilst this person may seem to be in the background they are absolutely key and it is good to get to know them as well as they have got to know your brain tumour. Technology changes. You can have an MRI scan and the next time you go the scanner will have been updated. This is not significant. What is important is that, wherever possible, the same consultant radiologist reads your scans so that you have continuity. They will be able to detect any changes to your low grade tumour. Again, you may need to take any past scans with you, just in case they aren't available.

The clinical psychologist

You may not get a referral automatically to the clinical psychologist. This came about because of the problems Meg has with short term memory loss and disorientation and it came from the community rehabilitation nurse (see next entry). But this is a good person to have on your side. In an initial meeting lasting about two hours, the clinical psychologist will talk to you and listen to how your daily life is being affected. At this point they will make a decision as to whether yours is a case that is worth following up. Three two hour sessions will then follow when a range of testing is done which measures IQ, memory and other cognitive brain functions. The psychologist will be able to suggest strategies that will help you to cope with day to day living. More importantly however, the tests from a baseline against which any deterioration or improvement in brain function can be measured.

The community neurological rehabilitation nurse

Now this is a fantastic person and if you are lucky enough to get a referral, either from your GP or one of your consultants, this person can unlock many things for you. Their role is to provide support for people who have had some sort of head trauma. The community neurological rehabilitation nurse will visit you in your home, talk to you about what is going on, and what support is available. They will provide support and advice to help you manage your condition. And if they can't help, then they 'know a man who can'.

The epilepsy nurse

This person is your point of contact for information and support to do with epilepsy. They can provide treatment advice, information and support specific to your needs, presentation, medication and management plan. This includes:

• Anti Epilepsy Drug side effects or seizures and their management
• interactions between AEDs or a newly prescribed medication and AED
• advice when medication is missed
• the common causes of epilepsy
• different seizure types, their presentation and documentation
• exacerbating factors
• imaging and EEG procedures and findings and their significance
• first aid for seizures

The disability coordinator (if you are in higher education)

OK, so it took Meg a year before she decided to meet the disability coordinator at her university. And guess what? She really wished she had gone to see her sooner. But you need to come to this decision in your own time and Meg just wasn't ready for it in her first year at university. The disability coordinator deals with the additional support that you may need and every HE institution will have one. The additional support is for any student who needs help to learn, whether or not they are disabled. Students additional support needs may relate to their physical or mental health, to a recognised disability, or to a particular learning difficulty. They have responsibility for assessing and arranging support for you. Meg's disability is hidden. Things like short term memory loss and disorientation are not obvious. But the disability coordinator assessed Meg and this unlocked the Disabled Students' Allowance (you don't have to pay this one back!) for her, providing her with all kinds of IT and human support. This allowance funds equipment and non-medical help, including photocopying. The coordinator will also liaise with your tutor and lecturers, to save you the time. And as a parent, this person has been great to have at the end of phone or on email.

For more information visit the DirectGov website »

It's good to talk

If you need more information or would like to have an informal chat then
you can call Helen on 01983 292 405 or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it