You are an expert in your body or condition. But sometimes it can feel hard when you disagree with your doctor, OT or specialist.
You know what you need. Your healthcare professional is there to help you find the right support. They should listen to you and your experience. They must put you at the centre of your care and support.
If you feel your healthcare professional has not done that, talk to them about your needs again. Ask for more information about:
what you should expect and when things will be done
what equipment is available to you
getting equipment that’s not available as standard
You might want to take a family member, partner or friend for support and confidence. You can also get support from advocacy services or the Patient Advice and Liaison Service (PALS).
Your doctor, OT or specialist should work with you to set goals for what you want to do.
For example, being able to travel and move around without support so you can be more independent.
Ask your healthcare professional to make a plan with you. You can use the plan to discuss any recommendations that do not help you achieve your goals.
If you feel equipment is missing from the recommendations, ask why it’s not included and explain why you think it should be. There will be some equipment the NHS cannot provide. But you can apply to your local authority for equipment and home adaptations too.
Your healthcare professional may ask you to try out some basic equipment at home and any other places you’ll use it first. Then they’ll adjust their recommendations based on your feedback.
You should get a follow-up appointment. If you do not, you can ask for a review if the equipment does not meet your needs.
Sometimes trying equipment can help you show that it does not meet your needs.
Explain why equipment is not working
It’s important to say if equipment is not working for you. Explain what the problems are and why it’s not suitable for your needs.
For example, you could try saying:
You gave me this equipment to help with getting around the house. I am unable to do that because the equipment causes me pain. It takes me an unreasonable amount of time to get from A to B.
This is affecting my mental health and wellbeing because I’m frustrated, tired and feel isolated.
I’ve not been able to meet my goal set out in my plan and I need a different piece of equipment. Please find an alternative that we can look at together.
It’s important to be clear about why equipment is not meeting your needs, such as making pain worse or creating more barriers. Some people say they feel guilty or ungrateful asking to change equipment the NHS has given them. But disability equipment is there to help you. If it’s not doing that, it’s OK to ask healthcare professionals to support you with this.
Asking for equipment
If there’s equipment you know will meet your needs, ask your healthcare professional for it. You will need to explain why you think the equipment will meet your needs better than their recommendation.
Warning NHS only covers what you need
The NHS can only meet your essential needs. They may not be able to give you the equipment you want. They might also start with basic equipment and only adjust their recommendation if it does not meet your needs.
If you think the standard NHS equipment will not meet your needs, ask if you can apply for a personal health budget. This is a NHS funded budget. It helps you get non-standard equipment that will meet your needs, such as:
an iPad with communication apps
hearing aids with more functionality so you can do your job
If you’re eligible for a personal health budget will depend on:
your local Clinical Commissioning Group (CCG)
your assessed needs
Talk to your healthcare professional about what equipment you might be able to get with the budget and if you’re eligible. Your healthcare professional can apply for the budget on your behalf. The CCG will review your application. It can take time to apply.
If the CCG says you cannot get a personal health budget, they should give you a clear reason why in writing. If you disagree with the decision, you can ask for a review and follow the complaints process.
Talk to the Patient Advice and Liaison Service (PALS) for more information about personal health budgets.
Personal wheelchair budget
The process is different for wheelchair users. You may be referred for a personal wheelchair budget if standard NHS wheelchairs do not meet your needs.
For example, all the NHS wheelchair models are heavier than your wheelchair. You need a lighter one because yours causes you pain and you cannot lift it into the car.
If your health professional does not change their recommendation
Healthcare professionals must explain why they cannot change a recommendation or agree to equipment you think will help. If you do not understand an answer, ask them to explain again. You could also try asking:
What does that mean for me?
Why is the equipment not available?
Why am I not able to get the equipment and how can we change that decision?
What other ways are available to me to get the equipment?
You could also ask a family member, friend or professional advocate to go with you. They can take notes or advocate for you.
If your healthcare professional does not know the answers, they should find out for you. Your healthcare professional should make sure you get the equipment you need.
Complaints about healthcare professionals or health services
There are a few things you can do if you’re:
having problems with the person handling your care
struggling to change their recommendation or decision
Meet with your healthcare professional again to complain
Tell them what you expected to happen and what you understood the outcomes would be. Explain why this has not happened and why you’re not happy with the service. Ask if you can work together to find a solution that will meet your needs.
Speak to your healthcare professional’s manager
If you’re still having problems, try speaking to their manager about the service or the problems you’re having. For example, it could be that they:
are not listening to you
cannot offer the equipment you need
are not helping you get the equipment, such as applying for a personal health budget
do not have enough knowledge about your condition or available equipment
Contact the service on the phone or by email. Ask to speak to a manager about an issue or the person managing your care.
If you feel the problem is with the person and not the service, ask to see a different healthcare professional, such as another OT or specialist.
Follow the complaints procedure
If you’re still not getting the support you need, follow the formal complaints procedure. Every NHS trust must publish their complaints procedure.
It can help to keep a record of your contact with your healthcare professional, such as:
dates you tried to contact them
emails you sent
their responses or emails they did not respond to
notes on visits or appointments
things you discussed and outcomes or actions you agreed
You can ask a family member, friend or advocate to help with this.
You can also ask for a copy of your health records from the service providing the equipment. You may be able to use these when you complain. Contact the service to ask what you need to do to get your records. You may need to ask in writing.