Onset and diagnosis

This page answers the following questions:

What will happen when I see my GP?
How long will I have to wait?
What can I do if I am still waiting for a diagnosis?
What happens if I require urgent treatment?
What will happen at my hospital appointment?
What type of information can I expect to receive from my specialist?
What is a clinical trial?
How are rare conditions diagnosed?
Can I ask for a second opinion?
What happens after I have been given my diagnosis?

What will happen when I see my GP?

You can experience the onset of a neurological condition at any time in your life. Some neurological conditions are diagnosed and treated by your GP. For other suspected neurological conditions your GP may wish to refer you to a specialist. You can ask to be referred to a particular specialist but you should have a reason for doing so. Your GP may also continue to be involved in the ongoing management of your condition.

How long will I have to wait?

Many people will see a specialist within a couple of months. The maximum waiting time specified by the Government from referral to the date of your first outpatient appointment with a specialist should be 18 weeks.

What can I do if I am still waiting for a diagnosis?

You may be given an initial diagnosis and then a confirmed diagnosis when all the tests have been completed. If you have to wait a long time for a diagnosis this should not delay you in accessing any services you need. If you need help with everyday living you can either speak to your GP or to social services.

Questions to consider asking your GP about referral to a specialist

  • Would it help to see a specialist?
  • Can I be referred to a specialist?
  • To which specialist am I being referred?
  • What is he/she a specialist in?
  • Where will I see the specialist?
  • Am I being treated as an urgent referral?
  • How long am I likely to have to wait to hear from the hospital?
  • How long am I likely to have to wait for the appointment?
  • Are there any tests I need to undertake before my appointment?
  • Are there any services I would benefit from whilst I am waiting for a diagnosis?
  • Is there any written material available?

What happens if I require urgent treatment?

There may be circumstances where you need an urgent diagnosis and/or urgent treatment. You should go through your GP or, if this is not possible, your local accident and emergency department.

You may be admitted to hospital for treatment and tests. If an ongoing neurological condition is suspected then you can be referred to specialist neurological services for diagnosis and further treatment.

What will happen at my hospital appointment?

Your specialist will explain the process of making the diagnosis. This will include the range of tests to be carried out, where and when they will be carried out and how long it is all likely to take. Three of the most common tests for neurological conditions are an Angiogram, a CT Scan and an MRI Scan.

You should feel free to bring someone with you to all your hospital appointments. If English is not your first language you can ask, in advance of your appointment, if your hospital can provide an interpreter. Ask if there is any written information in your language or any organisations that can help.

What type of information can I expect to receive from my specialist?

Your specialist will explain about your diagnosis, possible treatment options and the benefits and any risks of each treatment. You can also ask if there is any written information for you and your family to take away and read. The information provided should let you know about the implications of your diagnosis and treatment for your education and employment, if that is relevant to you.

Questions to consider when asking about treatment options

  • What are the different types of treatment options?
  • How long can I take to decide what treatment I have?
  • What is the likelihood of success of the treatment?
  • When will I know if the treatment has worked?
  • What if the treatment doesn’t work? Will I have to spend time in hospital? How often will I need treatment?
  • How long will my treatment last?
  • How will I feel during my treatment and are there any lasting side effects?
  • Will I be able to continue my current lifestyle?
  • Are my children at risk of developing this condition?
  • Who will manage my treatment?
  • Will the treatment or the condition affect my ability to drive?
  • Can I still work?
  • Can I be included as part of a clinical trial?

People often have difficulty absorbing all the information they receive at diagnosis. You can ask for someone to be available to discuss your diagnosis and its implications with you afterwards. This can be either by telephone or at another appointment. In some instances there will be a specialist nurse for you to speak to.

What is a clinical trial?

You may be asked to take part in a clinical trial or you may wish to offer to do so. Clinical trials assess the effectiveness and possible side effects of a new treatment before it is widely used. During a trial you will be closely observed. Any information recorded will be treated in the strictest confidence. It is your choice whether you participate or not. You can withdraw from a trial at any time without affecting your overall treatment.

How are rare conditions diagnosed?

Some neurological conditions are very rare. This means that you may not get a confirmed diagnosis immediately. It may sometimes be necessary for you to be referred to another specialist with different expertise. In these instances your first specialist will either refer you or advise your GP to make a second referral.

You should have access to specialists and treatment as close to home as possible. However, sometimes it may be necessary for additional advice to be sought from a specialist who works outside your area. This is known as ‘out of area treatment.’ You will not have to pay for this, although you will have to pay your own travel expenses to see that specialist. If you are in receipt of state benefits you may reclaim those travel expenses. There is a form available from either your referring doctor or your hospital.

Can I ask for a second opinion?

You are entitled to ask for a second opinion from another specialist at any stage in your treatment, although a second opinion is most commonly requested at diagnosis. You may ask your GP or your specialist to arrange for you to have a second opinion.

What happens after I have been given my diagnosis?

Your specialist will keep your GP informed about you. Your GP should be told quickly and in writing about your diagnosis and any proposed treatment. You can ask your specialist if you can have a copy of this letter. If you need further advice following your appointment with your specialist you should make an appointment with your GP.

You may need the help of social services in either the short or long term. You may wish to discuss this with your specialist, GP, or other health professional. If you are already under the care of social services it is a good idea to inform them of your diagnosis. They can then reassess the services they provide to you.

Next: Hospital stay

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