Frequently asked questions
Here are some of the questions that people often ask us when they call the Helpline. Because everyone is different, we haven't included any specific medical questions here, so if you would like to have a 2 way conversation about your particular situation or if your question is not answered here, please contact the helpline.
What do I do if I think I have a neurological problem?
The first step is to visit your GP. He or she may prescribe you some medication or treatment to see if this controls the symptoms. If your GP thinks you require further investigation you may be referred to a neurologist or neurosurgeon.
See our information on diagnosis for more information.
My GP has not referred me to a neurologist and I am concerned my symptoms need further investigation by a specialist.
Return to your GP and discuss your concerns. It can be helpful to keep a simple diary of your symptoms, such as when they occur and what happens, etc. This can help you describe things to your GP and explain why you want to see a specialist. If you are still unsatisfied with the answers/suggestions given, you might want to think about seeking the opinion of another GP.
I would like to get a second opinion, how do I do this?
If you are unsatisfied with the advice you have been given by your doctor, you may ask for a second opinion. This must be done through your GP or consultant. He or she will rarely refuse to refer you unless there is a sufficient reason.
There is a long waiting list to see a specialist, how can I make a private appointment?
Your GP will need to make a private referral on your behalf. A private referral can speed up the process and avoids waiting lists. Once you have seen a specialist you may be able to have further treatment and/or investigations on the NHS. An initial consultation with a specialist can cost approximately £150-300, however, this is a guide only and prices may vary. It is likely that the neurologist or neurosurgeon you see privately will be the same person as you would see on the NHS. If you are having difficult obtaining a specialist private referral, try contacting the private patient manager of your nearest hospital and they will be able to provide you with information about the process.
My doctor is always very busy and I don’t like taking up their time, I often feel rushed and forget what we discussed, what can I do to help this?
Try writing down a list of questions you would like to ask your doctor. This will help bring some structure to your appointment. Don’t be afraid to write some notes or ask your doctor to spell a medical term. It can also be helpful to take a relative or close friend to the appointment as a ‘second pair of ears’. Write down what your doctor told you as soon as possible after the appointment or take notes so you don’t forget what they said.
See our list of suggested questions to ask your doctor.
Why do I have to travel to see a neuro specialist?
Not every hospital has a neurologist or neurosurgeon, in fact there are only 31 neuroscience units in the country and around 110 neurosurgeons. This is why waiting lists tend to be long. Occasionally neurologists make regular visits and hold clinics in local hospitals, however, if you require further specialist investigations it is likely you will have to go you nearest neuro unit.
Why do I have to wait for a scan?
Not all hospitals have scanners, especially Magnetic Resonance Imaging (MRI) scans. These are generally situated in larger district or specialist hospitals. The scanning equipment is very expensive and requires specialist staff to operate the machines.
Because the scanning machine is in such high demand, the radiologists have to prioritise when people have their scan.
See our Brain and spine scans fact sheet for more information on scans.
Why do I have to wait so long for a diagnosis?
In the UK, neurosurgeons work in 31 neuroscience centres and neurologists work in the same centres, as well as in larger district hospitals. This limits the outpatients and inpatient facilities. You may have had to wait many months to see a specialist and then a further wait for the investigations to take place. Diagnosing someone with a neurological condition is often likened to doing a jigsaw puzzle: collecting all the pieces together and putting them in the right order.
Often neurological illnesses alter over many months or years. Keeping a diary of your changing symptoms may help you and the doctor see how and when the changes occurred. As time goes by the diagnosis may become more obvious.
See our information on diagnosis for more information.
When I phoned the hospital the day before my operation I was told it had been cancelled. The operation has been planned for months so why did they say no bed was available?
When an operation is cancelled at very short notice, it understandably causes a great deal of stress and upset. In the majority of cases, a routine or non-urgent operation is cancelled because there are no beds available. This generally occurs because an emergency has been admitted. It can happen quite a lot in neurosurgical wards because many of the people that require neurosurgery are admitted as an emergency.
If your operation is cancelled by the hospital on the day of surgery for non-clinical reasons (e.g., not because you were not well enough to have the operation), the hospital will aim to offer within a maximum of 28 days, or fund the patient’s treatment elsewhere. This also includes operations that are cancelled for non-clinical reasons at the last minute on the planned day of admission.
I have neurological symptoms, can I still drive?
There are strict guidelines to determine whether or not you can continue to drive. These are determined by your consultant and the Driving Vehicle Licensing Agency (DVLA).
For further information see the DVLA website and discuss this with your consultant and GP.
How can I get benefits?
Applying for benefits can appear complex and overwhelming. There are several people who can aid you, through your application for benefits. Your social worker and Citizens Advice Bureau may be of assistance.
There is also the benefits section of Gov.uk, a government website, which outlines the different benefits you may be entitled to.
How can I get access to my medical records?
In November 1990, the Access to Health Records Act was passed giving patients the statutory right to have access to their medical records. This allows you to have access to medical records written after this date, although there are some restrictions. For example, you may be refused access if it is felt that the information is likely to cause harm to the patient or to another person.
If you wish to see the medical records held by your GP then write to your GP, or to the Health Records Manager at your hospital if you wish to see your hospital notes. You may be sent a form to complete before an appointment is made for you to see your records.
You may be asked to pay a charge to access your records which vary according to whether they are held on a computer, held manually and if you request a photocopy of them.
The Patients Association produces a booklet called How to obtain access to your medical records.
How do I make a complaint about my doctor or the care that I have received?
If you wish to make a complaint about your GP ask your practice for details of their procedure and for the person responsible for investigating complaints. Alternatively, you can write to the complaints manager at your local Primary Care Trust (PCT).
If you have a complaint about your hospital or NHS trust you should contact the Patient Advice and Liaison Service (PALS) at the hospital concerned. You can also write to the Chief Executive of the hospital.
If you are unsatisifed with the outcome you can contact:
- the Parliamentary and Health Service Ombudsman (England)
- Scottish Public Service Ombudsman
- Public Service Ombudsman for Wales
- Northern Ireland Ombudsman
All of these are completely independent of the NHS and government.
- NHS Choices has a page on how to complain.
- The Patients Association produces a leaflet called Making a complaint.
- You can also contact The NHS Complaints Advocacy for help with making a complaint about the NHS or if you are in the south-west of England, you can contact SEAP.
Still got questions?
Our Helpline nurses can always answer your questions on any neurological topic. Send an email to firstname.lastname@example.org or call free on 0808 808 1000.
You can read more about the helpline here.