Your Rights When You're Waiting for NHS Care — A Guide for Unpaid Carers

If you're supporting someone through the NHS system, you've probably felt it: the letters that don't explain anything, the not knowing if anyone's actually looking at the referral, the appointment that turns up with two days' notice. NHS England has just set out minimum standards that every hospital and clinic has to meet for "planned care" — non-urgent, booked-ahead treatment. This guide explains what those standards mean for you in plain terms, and what to do if they're not being met.

What counts as "planned care"?

Planned (or "elective") care is any non-emergency treatment that's booked in advance — things like a hip replacement, a specialist consultation, or ongoing outpatient care. These standards apply from the moment a referral is received until treatment starts, until you and the clinician agree no treatment is needed, or until you choose not to go ahead. They don't apply to A&E, 999 emergencies, or urgent cancer pathways in the same way, though most of the same principles still hold there.

The eight things you can now expect

STANDARD 1

You'll know your referral has been received

Within 28 days of a referral being made, there should be confirmation of what happens next — usually via the NHS App, but also by text or post. If nothing arrives after 28 days, contact the provider first; if that doesn't work, the GP practice can chase it.

STANDARD 2

You can be named as the carer they talk to

If the person you care for wants you involved, they can tell their provider what information can be shared with you, how you should be contacted, and when. Nothing is shared without the patient's agreement — but once given, this should mean fewer "I don't know, ask them" moments.

STANDARD 3

You'll get contact details and self-care information

Once a referral is accepted, there should be clear contact details for practical questions (appointment times, travel, access needs), separate advice on what to do if symptoms get worse, and information to help manage the condition while waiting.

STANDARD 4

You'll hear something at least every 12 weeks

While on a waiting list, there should be an update at least every 12 weeks confirming the person is still on the list. This may ask for a health update in return — and if circumstances change and the care's no longer needed, letting the service know helps someone else get seen sooner.

STANDARD 5

Reasonable adjustments should be arranged before appointments

Needs — a wheelchair, an interpreter, a hearing loop, extra appointment time — should be asked about when the referral is accepted, and again before the appointment itself.

STANDARD 6

Appointments come with at least 21 days' notice

Except when arranged at short notice (an urgent slot or a cancellation opening up), you should get at least 21 days' notice of an appointment, including what it's for and how to prepare.

STANDARD 7

Cancelled appointments get rebooked within 28 days

If an appointment is cancelled — by the patient or the provider — a new date should be offered within 28 days, even if the appointment itself ends up being later than that.

STANDARD 8

You'll be told clearly when care is finished

When treatment ends, or no treatment is needed, this should be explained clearly — including whether there's a booked follow-up, or "patient initiated follow-up" (PIFU), where you contact the service yourself if a follow-up's needed later.

Keep a record as you go

None of the standards above are much use if you can't show what was — or wasn't — said. A simple running log makes it far easier to get things fixed quickly, and it's exactly what PALS or a formal complaint will ask for anyway. For every call, letter, or appointment, jot down:

Date and time of the contact
Who you spoke to — name, role, and department if given
What was said — in a few words, not a full transcript
What was promised — a callback, a date, a next step — and by when
Reference numbers — for the referral, the appointment, or the complaint

Keep texts, letters, and NHS App messages rather than deleting them, and save them somewhere you can find quickly — a notebook, a phone note, or a folder of screenshots all work. If a promised update doesn't arrive (say, the 12-week check-in, or the 28-day rebooking after a cancellation), your log is what turns "I think they said..." into "on the 4th, X told me Y would happen by Z" — which is a much stronger starting point with PALS.

If any of this isn't happening

Every NHS planned care provider is expected to meet these standards. If they're not being met for someone you care for:

Contact the hospital or clinic directly first — many issues are just a communication gap.
If that doesn't resolve it, contact the Patient Advice and Liaison Service (PALS) at the relevant hospital — they offer free, confidential advice and can help raise a formal complaint if needed.
If someone has waited, or is told they're likely to wait, longer than 18 weeks for non-urgent treatment, they have a legal right to ask to be seen by a different, faster provider — the hospital or Integrated Care Board (ICB) has to offer suitable alternatives.

Worth knowing: the person you care for also has a legal right to choose which hospital or clinic they're first referred to for most non-urgent, consultant-led care — this doesn't apply to urgent referrals, onward referrals for care already underway, or a handful of other exceptions, but it's worth asking about at the point of referral.

A gap worth knowing about — consent and capacity. The standards are clear that providers can only share information with you if the person you care for agrees to it — but they don't say how that agreement should be given — written, verbal, once, or reconfirmed each time — or what happens if that person isn't able to make that decision themselves. In practice, capacity is judged decision-by-decision, at the time, by clinical staff — it isn't a fixed label. If the person you care for can clearly say yes, a verbal "yes, you can talk to my carer" is usually enough. But if their capacity is in doubt, being a carer — even a spouse or child — gives you no automatic legal right to be consulted; "next of kin" isn't a formal legal status in England. A registered Lasting Power of Attorney (Health and Welfare) is what gives you clear legal standing to be involved in these decisions. See our free LPA Video Guides to understand how it works.

While you're waiting, don't miss out elsewhere. Long waits often mean carers are doing more, for longer, without anyone flagging what they might be entitled to. It's worth two minutes to check whether you or the person you care for could claim Attendance Allowance, Carer's Allowance, or a Council Tax reduction — take the free "Can I Claim This?" check →

Based on NHS England's "Minimum standards for planned patient care" (Publication reference PRN02340_i; published 3 July 2026, last updated 8 July 2026). This guide summarises the standards in plain language — for the full document and your complete rights under the NHS Constitution, see the original NHS England publication.