Support for patients with chronic pain must be improved, says Healthwatch England

Living with chronic pain limits your ability to live and work, it can also feel isolating and has a negative impact on people’s mental health. Research on participants from the UK Biobank estimates that nearly half (46%) of people with widespread chronic pain have also experienced depression. Ensuring people have the right support from the NHS to manage pain and protect wellbeing is therefore vital.

This kind of support spans different parts of the NHS, such as:

• Initial help from GPs, or practice-based physiotherapists to whom patients may be able to self-refer.
• Hospital-based multidisciplinary pain clinics, staffed by multidisciplinary teams that may include pain consultants, physios, specialist nurses, clinical psychologists, occupational therapists and pharmacists.
• Highly specialist national services for very complex patients.

Healthwatch England have shared that many patients have a poor experience of accessing pain management support.  
 

Long waits for care

One of the most common issues patients raised was long waiting times. People described months - sometimes years - of waiting for treatment, often without updates or clear timelines.

A 2022 survey commissioned by BBC News found that nearly a quarter (23%) of people who live with chronic pain are on waiting lists for surgery or a pain-management programme.

When treatment plans are agreed but never followed up, patients lose trust in the system meant to support them.

"I suffer with Fibromyalgia and Chronic Pain Syndrome and rely on the pain team for regular treatments. In May 2024 I had a lidocaine infusion on the understanding that the follow-up would be six months later – we are now in May 2025 and I’m still waiting. There’s been no letters since July 2024." 

Story shared with Healthwatch Norfolk.

Administrative failures

Many people told us that delays to their care are caused by lost referrals, letters sent to the wrong address, and inaccurate records.

For patients already in pain, chasing paperwork adds another layer of distress.

"I was referred to pain management. After waiting 18 months I asked when I would be seen, only to be told I was taken off the list. They had sent my appointment to the wrong address." 

Story shared with Healthwatch Blackpool 

"I had referrals requested in January 2025, now told they were never made, although the NHS app shows otherwise." 

Story shared withHealthwatch Hertfordshire.
 

Poor communication

Lack of communication from healthcare teams was a recurring theme. People felt abandoned while waiting, with no support or advice to help them cope. Simple measures, such as information packs, peer support, or check-ins could make long waits less isolating.

"I have been waiting for almost a year to be seen by the hospital pain clinic. I need support whilst waiting, like a list of books that could help or something. Like going on a course for diabetes. It has been a 6 month wait for an urgent referral."

Story shared with Healthwatch Warwickshire.

Medication issues

Some people told us about GPs reducing or stopping prescriptions without consulting them first, leaving them in pain or at risk of harm.

We also heard from people whose pain clinic was abruptly shut down which can make accessing care and medication harder.

Patients who struggle to leave their home because of their pain can have trouble getting their pain prescriptions, and carers of patients told us they struggle to pick up medication during limited hours. In one case, a housebound patient told us that despite a consultant’s letter and a joint meeting with the GP practice and pharmacy, they still found their medication wasn’t ready on time, leaving them frustrated and without essential pain relief.

What needs to change?

Healthwatch England have outlined that many of the changes required to improve care of people with chronic pain fall under current government ambitions, such as:

• Cutting waiting times for people needing outpatient appointment or hospital treatment, down to no longer than 18 weeks from GP referral, by 2029.
• Delivering more care outside of hospital, in multidisciplinary neighbourhood health services or centres, and by encouraging GPs through incentive payments to seek ‘Advice and Guidance’ from consultants about how patients can be managed instead of, or ahead of any hospital follow-up.
• Greater use of digital tools to deliver health management programmes (such as anAI physio tool used by one NHS trust in the East of England).

Increasing and making the most of health professionals

A refreshed NHS workforce plan, due later this year, creates an opportunity to review recruitment targets for different professions. Professional bodies are calling for:

• More specialist GPs in pain able to provide more care outside of hospital, such as pain injections
• First Contact physiotherapist also enabled to do more in primary care, such as prescribing and ordering investigations
• Ensuring hospital pain clinics contain a full multidisciplinary team

Providing a full range of support, not just medication

Health professionals and patients have called for access to a full range of therapies to be made available, regardless of where you live, such as:

• Psychological support
• Support groups
• Back-to-work programmes
• Physiotherapy
• Affordable access to exercise and wellbeing activities.

It’s particularly important for patients with limited mobility to know what help is available for travelling to appointments or collecting medication – such as free delivery services offered by some pharmacies and patient transport for hospital appointments.

Read Healthwatch England’s full article here.