Why support for patients with chronic pain must be improved

For millions of people in England, chronic pain is a daily reality. From back problems and arthritis to fibromyalgia, injuries, and the after-effects of surgery or cancer, pain can be a constant burden. 

Living with chronic pain limits your ability to live and work, it can 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.

Chronic pain is one of the most common health problems in England, but it remains one of the least visible. 

National research shows:

• Around 28 million people in England live with some form of chronic pain — nearly half the adult population (Faculty of Pain Medicine).
• For many, pain is severe: an estimated 8 million adults have pain so intense that it prevents them from taking part in everyday activities (Versus Arthritis).

Behind these statistics are people who feel their needs are not being met. Healthwatch regularly hear from people who are struggling to manage their conditions, often without the right support.

The picture in North Yorkshire

Although there are no exact figures for North Yorkshire, regional data paints a clear picture. Research from Newcastle University shows that just under 37% of adults in the North of England live with chronic pain.

With a population of about 621,000 people in North Yorkshire (Office for National Statistics 2022 mid-year estimate), this means an estimated 230,000 to 267,000 residents are living with chronic pain. That’s almost 2 in every 5 people.

Where support comes from

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.

The stories shared with Healthwatch, however, show many patients have a poor experience of accessing pain management support.

The problems patients are facing

People told us about long waits, cancelled appointments, poor aftercare, and feeling like they weren’t listened to. For some, there were multiple barriers and delays, and we heard from people who felt forced to pay for help or go without care.

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 BBC News survey 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 have ongoing back issues. I have been referred to the musculoskeletal clinic and told I won’t be seen for weeks, if not months. I am in agony. The GP agrees I need an MRI (magnetic resonance imaging) scan, but only the clinic can arrange this. You wouldn’t leave an animal in the pain I’m in.”

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 told I’d have a hospital consultation in six months. It took three years. I’ve had problems with my ankle since 2023, but only saw a doctor in 2024. I feel like I’ve fallen through the cracks. Better communication between departments is needed.”

“I need close dental follow-up because of a chronic condition. My dentist stopped providing NHS treatment, so I had to go private even though I’m on a low income. If I lose teeth, I may not be able to afford treatment.”

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.

“My mother, despite being very active at 84, ended up placed on a locked ward after a fall. She became unhappy and deteriorated quickly. No one explained why, and I had to plead for her release. We felt completely left in the dark.”

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.

The impact on people’s lives

Living with untreated pain affects every part of life. People described losing their jobs, income, and independence.

“I had to give up my job as a shop assistant because of chronic back pain. After cancelled scans and delays, I simply couldn’t keep standing at the till anymore.”

Others said they had no choice but to self-medicate, even when it was unsafe.

“When I couldn’t get help for my pain, I started relying on strong over-the-counter medication. I knew the risks, but I was desperate just to get through each day.”

In one particularly tragic case, a patient with severe back pain waited months for a referral. He was then diagnosed with cancer and died soon after. The family got in touch with Healthwatch as they believed earlier checks might have helped save his life.

For those who can afford it, the contrast between NHS delays and private treatment is stark. This two-tier system leaves those who can’t afford to go private suffering.

“I eventually paid for a private scan which revealed spinal nerve compression. I had treatment within days. If I’d waited on the NHS, my condition could have deteriorated further.”

When care works well

Not all experiences were negative. Some patients spoke of excellent care that was respectful, holistic, and empowering.

“I developed back pain with a urinary tract infection and ended up in A&E after calling 111. The staff were professional, friendly, and quick to act. I recovered well thanks to their care. It showed how brilliant the NHS can be when things work.”

Others praised group courses where peer support was as valuable as clinical advice.

“Being part of a pain support workshop helped me not just physically, but mentally. Meeting others in the same situation made me feel less alone.”

These stories show that good care is happening. However, action needs to be taken to ensure this becomes the standard, not the exception.

By learning from people’s experiences, including the frustrations and the examples of care that worked well, the NHS can build a system that is fairer and more consistent.