When you leave hospital, make sure any concerns you have are resolved and that any planned aftercare is right for you.
Being discharged from hospital
Making preparations for going home (discharge planning) often starts at admission. To make sure everything is in place to get home safely, you will be asked for information, such as phone numbers of people who will help you at home.
Before you are discharged, healthcare staff should assess what support you may need when you leave hospital. If any support needs are identified, these should be recorded in a written care plan. You should not be discharged until the support you will need has been put in place.
If you rely on home care services, avoid going home over a weekend if you can. These services normally need 48 hours notice to start care again. If you weren’t receiving care at home before you were admitted to hospital and now need it, you will be assigned a social worker who will arrange the care you need.
Hospitals try to give you a specific discharge time. It is important you keep taking your Parkinson’s medication, even while you are waiting to leave.
Check with the pharmacy that you will be given enough medication for when you get home – you will usually get a 2 week supply. This is especially important if your medications have been changed during your stay in hospital, as you may not have stocks of this medication in the right doses at home.
Follow up care may include visits from community nurses and therapists as well as hospital outpatient visits.
If you are concerned about arrangements for going home after a hospital stay, you may be able to speak to a hospital social worker.
It is also worth thinking about how you will get to outpatient appointments if your mobility needs have changed – if you are unable to drive for a period of time, for example.
If you have been in hospital for a long time or your mobility has changed, it may be possible for an occupational therapist to arrange a home visit with you before you are discharged.
This can help identify activities you may find difficult when you get home. The occupational therapist can suggest special aids, equipment, or other plans to make tasks easier.
Will having Parkinson’s affect my recovery time?
Being in hospital can be stressful and having Parkinson’s may mean you need longer to recover than someone who doesn’t have the condition.
If you have any concerns about this, talk to the healthcare team in charge of your treatment, your specialist or Parkinson’s nurse.
How important is aftercare once I have left hospital?
This is very important. If you have a hip operation for example, physiotherapy will be crucial in helping you get better.
Your healthcare team will talk to you about how your Parkinson’s symptoms may have an impact on your aftercare and create a programme that meets your needs.
Preparing for an appointment
If you are receiving hospital care, but do not need to stay in hospital, you are treated as an outpatient.
What to ask at your appointment
Making a list of the questions you want to ask before your appointment will help you feel more prepared.
- What are my treatment options for this condition?
- What are the advantages or disadvantages of the different treatment options?
- How may my Parkinson’s be affected by treatment?
At your appointment
Take someone with you
You may find it helpful to take someone with you to your appointment for support – perhaps your partner, a family member or friend.
Tell whoever comes with you what you want to talk about before your appointment, so that they can remind you if anything slips your mind.
If you have problems speaking or writing, the person with you may also help by speaking on your behalf or taking notes.
Take everything you need
You will usually be asked to bring details of the medication you are taking. You may find it helpful to bring your medication with you, including the bottles or packaging.
If you use glasses or hearing aids, make sure you take these with you to the appointment.
If you have communication problems, make sure your GP, specialist or Parkinson’s nurse is aware of these and any methods or equipment you use to make it easier for you to communicate.
Don’t be afraid to ask questions
If a healthcare professional says things you don’t understand, ask them to explain.
It is much better to admit you don’t understand than pretend you do, and then find you don’t know what you need to do when you get home.
You may find it helpful to write down the answers to the questions and any instructions you are given, to help you remember after your appointment.
If you have trouble writing, ask the healthcare professional to write it out for you.
Transport to and from hospital
If you have an outpatient appointment, it’s worth considering how you will get to and from the hospital.
You will normally be expected to make your own way to your appointment. If this is not possible, you may be able to use the Patient Transport Services.
This NHS service offers free transport for people who have a medical need. You should discuss whether you are entitled to this service with your GP or the healthcare professional who referred you to the outpatient clinic.
- If you live in England or Northern Ireland, your GP will need to book transport for you.
- In Scotland, you can arrange your own patient transport by calling 0300 123 1236, or visiting the Scottish Ambulance Service's website
- In Wales, you can arrange your own transport depending on where you live. In North Wales, you can arrange transport by calling 0845 60 76 181, or 0844 87 00 888 if you live in the Central and West regions. In South Wales, you should call 0800 32 82 332 for the first journey you make. For any future journeys, you should call 0300 100 0012. If you live in any other region in Wales, you should talk to your GP about arranging transport.
For more information on transport services, you should speak to your GP, or local Patient and Advice Liaison Service (PALS).
If you aren’t eligible for the Patient Transport Services, you may be able to claim a refund for the cost of transport to your outpatient appointment from the Healthcare Travel Costs Scheme.
To get a refund you will need to show you are not able to afford the cost of travelling to hospital and do not have a friend or relative who can take you.
Complaining and giving feedback about your treatment
If you are unhappy with the treatment you receive in hospital, you may want to complain. You should raise your concerns with the ward staff first if you are in hospital.
By complaining, you can improve care for both yourself if you go into hospital again, and for other people affected by Parkinson’s.
Don’t worry about how a complaint will affect your future care – hospital staff are committed to providing the best possible care for all patients, and complaining can highlight issues.
You may also like to let staff know when things have gone right. If you feel the care you have received was excellent, compliment staff and write to hospital managers when you get home.
You should also let Parkinson’s UK know so we can make sure good practice is spread by highlighting organisations that offer great care.
The Patient Advice and Liaison Service (PALS) is based in your hospital and can help you resolve concerns or problems you’re facing with the NHS.
They can also give you advice on health-related questions and give you information about the NHS complaints procedure. This includes how to get independent help if you want to go ahead and lodge a complaint. Ward staff will have contact details for them.
In England, you can also get involved in Healthwatch. This is an independent consumer organisation that aims to make sure the views and experiences of people who use health and social care services are heard and taken seriously – both locally and nationally.
Your local Healthwatch can help with complaints you have about services, including those related to your Parkinson’s.
You can contact the Patient Advice and Support Service (PASS) run by the Citizens Advice Bureau.
You can contact the Community Health Council for the Local Health Board where you are being treated.
In Northern Ireland
The equivalent body in Northern Ireland is the Patient and Client Council (PCC).
The council is an independent body whose aim is to provide a powerful voice for patients, carers, and communities on health and social care issues. They listen, act on people’s views, help people make a complaint, and provide advice and information.
Care Opinion is an independent, non-profit feedback platform for health services. By sharing your hospital experience with Care Opinion you can help to improve UK health services.
Medicines and Healthcare Products Regulatory Agency (MHRA)
If you want to complain because you did not get your medication on time while you were in hospital, we also encourage you to tell the Medicines and Healthcare products Regulatory Agency (MHRA), using their Yellow Card Scheme.
The scheme helps the MHRA monitor how safely medicines are being used.
Regulatory professional bodies
If you have a complaint against a nurse or doctor, it is always best to raise the issue with the hospital where you received the care first, or take advice from the organisations above.
The General Medical Council registers doctors to work in the UK. The Nursing and Midwifery Council does the same for nurses and midwives.
The General Medical Council has produced some helpful information, 'What to expect from your doctor: a guide for patients'. The guide explains what you can expect from your doctor and how you can help create a partnership with them.
The Nursing and Midwifery Council have also produced a booklet, 'Raising concerns about nurses or midwives', which gives you guidance on what you can do if you are worried about the care you have received.
Download this information
We know lots of people would rather have something in their hands to read rather than look at a screen, so you can order printed copies of our information by post, phone or email.
Last updated October 2014. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected].