How to navigate the NHS as a wheelchair user

Navigating the NHS is a challenge and can often be frustrating for young people, their families and carers. 

In this guide we’ll break down the different layers of the NHS, what they do and how you can access them. We’ll also explain who you can speak with if things go wrong. 

How the NHS is structured

The NHS seems to be in a constant state of change. In England, the NHS is (currently) divided into several key parts:

• GP services: your local doctor is the first point of contact for most health issues and referrals
• Community services: community-based services include things like physiotherapy, occupational therapy and wheelchair services
• Hospitals and specialist centres: these are dedicated facilities where you go for ongoing treatment, surgery, or assessments (if needed)
• Integrated Care Boards (ICBs): these are the regional organisations responsible for planning and funding most NHS services, including wheelchair services
• Patient Advice and Liaison Services (PALS): PALS is there to provide support, guidance and help with NHS services – including dealing with ongoing problems

The structure of the NHS is different in Scotland, Ireland and Wales. We’re also seeing changes in how the NHS is structured in England, so this list may change. 

You can find out more about the local NHS services near you with the official service finder tool.

Start with your GP

Your GP (or family doctor) is your gateway to NHS support. You should be able to request an appointment with your GP at any time. They can help with a range of things, including:

• Ongoing medical care, support and guidance
• Referrals for specialist assessment (e.g. physiotherapy, OT, or wheelchair services)
• Medical evidence for funding applications

GPs are often seen as the gatekeepers to the NHS. We know that many parents can find it a challenge to request the support they need and gain a referral. When requesting a referral, be clear about what’s needed and why. It can be useful to write some notes before visiting the GP to ensure you request the support you need first time. 

Working with specialist teams

Once a referral has been made, you’ll start to work with specialist teams like the wheelchair service, occupational therapists, physiotherapists, and specialist nurses. 

These professionals will be able to offer more help than a GP. They’ll assess your needs and make recommendations for equipment, therapy, or adaptations.

You may have one appointment or several. It’s a good idea to create a folder where you can keep copies of all reports and assessments.

There can be lots of information to take in at an appointment. You can ask for written summaries after appointments. It’s important to confirm what happens next, who to contact for follow-up, and timelines. Mark these on a calendar and be sure to follow up if you don’t hear anything.

How to manage waiting times

The NHS is under pressure and it’s unlikely you’ll be seen immediately, unless it’s an urgent problem. 

It’s important for you to take charge of the process as much as you can. During appointments or on phone calls, ask when you can expect an appointment and note it down.

Don’t be afraid to follow up politely if you’ve not been seen or contacted after the timeframe given. Persistence can pay off here, especially when services are stretched.

Staying organised is vital during this stage. Keep a folder with letters, reports, and names of professionals you’ve spoken to.

What to do if things go wrong

Hopefully you’ll get the care you need. If you feel you’re not being heard then start by talking to the service directly, rather than making a formal complaint. You can raise issues and ask for these to be escalated. 

If that doesn’t work, contact your local Patient Advice and Liaison Service (PALS) for help. They can investigate complaints and support you through the process.

In most cases, this should be enough. For more serious problems or if PALS can’t solve the issue, you can submit a formal complaint through the NHS website or seek independent advice from Healthwatch England or Citizens Advice.

Essential links

• NHS services and contact 
• Patient Advice and Liaison Service (PALS) – find via your local NHS Trust
• Healthwatch England
• Citizens Advice