How to stay informed while you wait for care

The wait for planned medical care or surgery can be frustrating. That’s why you must get regular and accessible updates while you wait.

Communications from healthcare staff should:

Be personalised to you and not just a generic response

When healthcare staff contact you about your care, they should provide clear information about the next steps. They should make you aware of realistic timescales and what to expect while you wait so that you can make an informed decision.

Use clear language

When healthcare staff contact you, they should use clear, accessible language that is easy to understand whether they communicate by letter, email or phone. Of course, sometimes technical terms are needed, but if you need help understanding any information you're told, you can ask for it to be explained.

Be transparent around delays and cancellations

When contacted regarding a delay or cancellation of your care, you should receive a reason why and information about what happens next. Healthcare professionals must be open and honest with you, providing a realistic timescale on when you should expect to hear from them again.

Involve you in their decision-making

You should be part of any conversation concerning your health and care. Healthcare staff should support you in making the right decisions about your care and outline the risks and benefits of going ahead with, cancelling or delaying any form of care, such as treatment or procedures.

Provide you with the support you need while you wait

You should receive additional support and information to help you manage your health while waiting for care. The information you receive should outline who you should contact if your situation deteriorates. Your safety should always be the priority. If you are waiting for an operation and this gets cancelled for a non-clinical reason on the day you were due for surgery, your hospital should offer you another fixed date within 28 days or fund your treatment at a date and hospital of your choice.

Waiting for treatment can affect your mental health

We understand that waiting for treatment can take its toll on your mental health and ability to stay positive. There are lots of things you can do to support yourself whilst you wait for treatment:

If you need urgent help for your mental health the Samaritans are here to listen at any time of the day or night. 

116 123 (Free phone number)

Visit their website

In an emergency, or if your life is in danger always dial 999

Not getting the support you need? 

Here are a few organisations that’ll be able to help:

The Chartered Society of Physiotherapy (CSP)

The CSP have a range of resources you can use, including information on managing pain at home. 

https://www.csp.org.uk/public-patient

Endometriosis UK

Endometriosis UK run a support network to offer those affected by endometriosis the support and information they need to understand the condition and take control.

https://www.endometriosis-uk.org/get-support

ESCAPE-pain

ESCAPE is a method for managing either knee and hip pain or back pain. 

https://escape-pain.org/

Mind

Waiting for treatment can affect your mental health. Mind has information and resources about where to go for support. 

https://www.mind.org.uk/information-support/

Stroke Association

Find local support groups and advice to support your recovery from a stroke. 

https://www.stroke.org.uk/finding-support

Versus Arthritis

Versus Arthritis run a helpline, manage an online community and have a range of resources to help you manage your condition. 

https://www.versusarthritis.org/get-help