The Pain Plan Project

Helping people understand, access and confidently use personalised pain plans to improve crisis care and ensure their needs are recognised.

Our Mission

Too many people living with sickle cell arrive at hospital during a pain crisis only to repeat their medical history, explain which medications work, or wait while healthcare professionals try to understand their condition.

A personalised pain plan helps reduce uncertainty by providing clear, specialist-approved guidance tailored to your individual needs.

The Pain Plan Project exists to ensure every person living with sickle cell has access to a personalised pain plan, understands how to use it, and feels confident advocating for themselves when they need it most.

Our goal is to help people:

  • Understand what a pain plan is.
  • Access a personalised pain plan.
  • Keep their pain plan up to date.
  • Use their pain plan effectively during a crisis.
  • Advocate for themselves if their pain plan is not being followed.
  • Understand their rights when accessing emergency care.

  • What Is A Pain Plan?

    A pain plan is a personalised document created by your specialist healthcare team that outlines how your pain should be assessed and managed during a sickle cell crisis.

    Rather than relying on you to explain your medical history whilst you're in severe pain, a pain plan provides healthcare professionals with clear guidance based on your individual needs and your specialist team's recommendations.

    A pain plan may include:

    • Your diagnosis
    • Your pain management
    • Emergency guidance
    • Relevant Contact information

      Although every hospital's pain plan looks slightly different, the aim is always the same—to help you receive safe, timely and personalised care.

  • Why Is A Pain Plan Important?

    During a severe pain crisis, it may be difficult to clearly explain:

    • Your medical history.
    • Your usual pain presentation.
    • Which medications work well for you.
    • Previous reactions or allergies.
    • Advice from your specialist team.

    A pain plan helps healthcare professionals understand these important details quickly, allowing them to make informed decisions about your care.

    A pain plan can help:

    ✓ Reduce treatment delays

    ✓ Improve communication between patients and healthcare professionals

    ✓ Reduce the need to repeatedly explain your condition

    ✓ Improve consistency of care

    ✓ Support safer treatment decisions

    ✓ Ensure care reflects specialist recommendations

    ✓ Increase confidence when attending hospital

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Common Questions

  • Do I have a pain plan?

    Many people living with sickle cell aren't sure whether they have a personalised Pain Plan. If you're unsure, it's worth asking your healthcare team.

    Questions to ask:

    • Do I currently have a personalised Pain Plan?
    • Can I have a copy?
    • Is it up to date?
    • Who reviews and updates it?
    • How can hospitals access it if I attend A&E?

  • Can children have pain plans?

    Yes. There is no minimum age requirement - Pain Plans are created based on clinical need, not age. Some children have one from an early age, particularly if they have experienced significant pain crises or repeated hospital attendances.

    For younger children, the plan is developed with parents or carers alongside the specialist haemoglobinopathy team and is updated as the child grows.

  • Will every hospital automatically have access to it?

    Not always. Hospitals and NHS trusts may use different electronic record systems, so your Pain Plan might not be available if you attend a different hospital.

    For that reason, it's a good idea to:

    • Keep a digital or printed copy with you.
    • Save it on your phone so it's easy to access.
    • Ask your healthcare team how your pain plan is shared and whether it can be accessed by your local A&E.

  • Does having a pain plan guarantee a specific treatment?

    No. A personalised pain plan is intended to guide your care using recommendations from your specialist haemoglobinopathy team.

    Healthcare professionals may need to adjust your treatment based on your clinical condition or other medical considerations. If they do, they should explain why any changes are being made and discuss them with you wherever possible.

  • What happens if I don't have a personalised Pain Plan?

    You should still receive timely treatment. Having a personalised Pain Plan is helpful, but not having one should never delay your care. NICE guideline CG143 recommends that all patients presenting at hospital with an acute painful sickle cell episode should be offered analgesia (pain relief) within 30 minutes of arrival. Healthcare professionals should also ask what treatments worked well for you previously and use this information to guide your care.

  • What else might my Pain Plan be called?

    The name of your Pain Plan may vary depending on the hospital or NHS organisation caring for you. You may hear it referred to as a:

    • Personalised Pain Plan
    • Individualised Pain Plan
    • Individual Care Plan
    • Sickle Cell Pain Plan
    • Emergency Department (ED) Management Plan

    If you're unsure whether a healthcare professional is referring to your Pain Plan, don't be afraid to ask.

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If you don't currently have a pain plan, speak to your specialist healthcare team.

This may include your:

  • Haematology Consultant
  • Clinical Nurse Specialist
  • Haematology Department
  • Specialist Haemoglobinopathy Team


If you are not currently under the care of a specialist haemoglobinopathy service, speak to your GP about a referral.

A specialist team can review your treatment, develop a personalised pain plan and provide ongoing support.

Although pain plans differ between hospitals, they should include information that helps healthcare professionals understand both your condition and your individual treatment needs.

A pain plan commonly includes:

Diagnosis

  • Sickle cell genotype
  • Relevant medical history
  • Previous complications

Pain Management

  • Recommended medications
  • Medication doses
  • Escalation plans
  • Alternative options if treatment isn't effective

Emergency Care

  • Signs of deterioration
  • When senior review is recommended
  • Additional investigations that may be required

Healthcare Team

  • Haematology Consultant
  • Clinical Nurse Specialist
  • Haematology Department
  • Important contact information

A pain plan should be reviewed regularly to make sure it reflects your current treatment and healthcare needs.

You should ask for a review if:

  • Your medication changes.
  • Your treatment changes.
  • Your symptoms change.
  • You develop new complications.
  • Your specialist team recommends updates.

Questions to ask

  • When was my pain plan last reviewed?
  • Does anything need updating?
  • Who is responsible for reviewing my pain plan?
  • Should I have a new copy?

A pain plan is only helpful if it can be accessed when you need it.

Consider keeping:

✓ A printed copy at home

✓ A copy saved on your phone

✓ A copy in your hospital bag

✓ A copy with a trusted family member or carer

✓ A list of your current medications and emergency contacts

If you don't yet have a personalised Pain Plan, there are still steps you can take to help healthcare professionals understand your needs.

Alongside creating an A&E Summary Sheet, you may also be able to create a Universal Care Plan (UCP) if you receive care within London. The UCP is an NHS digital care plan that records important information about your health, care preferences and what matters most to you. It can be viewed through the NHS App (where available) and shared securely with healthcare professionals involved in your care.

A Universal Care Plan is not a replacement for a personalised Pain Plan, but it can help ensure important information is available while you're waiting for one or if you don't currently have one.

If you live outside London, your local NHS organisation may use a different system, such as ReSPECT (Recommended Summary Plan for Emergency Care and Treatment), or another local care planning tool.

Ask your GP or specialist team which care planning options are available in your area and whether your local NHS service offers a similar digital care planning service.

Find out more:

Whether you already have a personalised Pain Plan, are waiting for one, or don't currently have one, we strongly recommend creating an A&E Summary Sheet.

An A&E Summary Sheet provides healthcare professionals with key information about your condition and should be read alongside your personalised Pain Plan, where available. If you don't yet have a Pain Plan, it can still help guide your emergency care until one is available.

Keep it somewhere you can access quickly. We recommend:

  • Printing a copy to carry with you
  • Saving it on your phone
  • Sharing a copy with family, friends or carers
  • Taking it with you whenever you attend hospital

Remember to keep it up to date whenever your medications, treatment or contact details change.

Download Here

Personal Details:

Name:
Date of Birth:
Emergency Contact:
Relationship:
Number:

If I’m unable to advocate for myself, please contact the person listed above

My Diagnosis

Sickle cell genotype:
Other medical conditions:
Allergies:
Previous complications (e.g. Acute Chest Syndrome, Stroke, Splenic Sequestration):

My Haematology Team

Hospital:
Consultant:
Clinical Nurse Specialist:
Direct Telephone:
Out of Hours Contact (if available):

My Current Medication
Medication:
Dose:

Pain Management

My usual pain presentation:

A short description of what your crises are normally like.

Example:
Severe pain usually starts in my lower back and legs. Pain rapidly escalates and is often accompanied by nausea.

Medications that work well for me:

Medications that haven't been effective:

Drug allergies / adverse reactions:

My Pain Plan (if you have one):
I have a personalised pain plan.

Date last reviewed:

If it cannot be located electronically, please contact my haematology team.

Important Information

Examples:

  • My pain can escalate quickly.
  • Delays in treatment often make my pain more difficult to control.
  • Please refer to my personalised pain plan where available.
  • If required, please contact my haematology team for further advice.


Emergency Red Flags

Please seek urgent senior review if I develop:

Examples:
☐ Chest pain

☐ Difficulty breathing

☐ Fever

☐ Confusion

☐ Severe weakness

☐ Other concerns identified by my specialist team

Questions You Can Ask Me

If I'm able to answer, I can usually tell you:

Examples:

  • Where my pain started.
  • How severe my pain is.
  • Whether this feels like one of my usual crises.
  • What treatment has worked previously.
  • Whether anything feels different this time.

Your pain plan is designed to support your care from the moment you arrive at hospital. Making staff aware that you have one as early as possible can help ensure it is considered during your assessment.

If you're able to, try to bring:

✓ A printed copy of your pain plan

✓ A digital copy saved on your phone

✓ A list of your current medications

✓ Emergency contact information

✓ Any relevant medical documents, such as an A&E Summary Sheet

Having these available can help if your hospital is unable to access your records immediately.

Don't assume healthcare professionals will automatically know that you have one.

As early as possible, tell the nurse or doctor assessing you:

"I have a personalised sickle cell pain plan. Could it please be reviewed as part of my assessment?"

This simple reminder can help ensure your pain plan is considered alongside your clinical assessment.

Although every hospital works slightly differently, you can generally expect healthcare professionals to:

  • Assess your symptoms and pain.
  • Review your pain plan (where available).
  • Begin appropriate treatment.
  • Monitor your response to treatment.
  • Contact the haematology team if additional advice is needed.

If you're unsure whether your pain plan has been reviewed, it's okay to ask.

A pain plan is intended to guide your care during a sickle cell crisis.

However, some people report situations where:

  • Staff are unaware a pain plan exists.
  • The pain plan cannot be located.
  • The pain plan is out of date.
  • Treatment differs from the recommendations.
  • The haematology team has not been consulted.

Understanding what questions to ask can help ensure your pain plan is considered as part of your care.

Step 1: Confirm staff know you have a pain plan

Ask:

  • Has my pain plan been reviewed?
  • Can it be added to my notes?
  • Has my haematology team been informed?

These are reasonable questions that help ensure the correct information is being considered.

Step 2: If your pain plan cannot be found

Unfortunately, this can happen.

If possible:

✓ Provide your own copy.

✓ Show your A&E Summary Sheet.

✓ Ask staff to contact your haematology team.

✓ Ask whether your specialist service can be consulted.


Step 3: If your pain plan isn't being followed

Sometimes there may be a clinical reason why treatment differs from your pain plan.

If this happens, it's reasonable to ask for an explanation.

You could ask:

  • Can you explain why my pain plan isn't being followed?
  • Has my haematology team been consulted?
  • Is there an alternative treatment plan being recommended?
  • Could a senior clinician review my care?

These questions aren't confrontational—they help ensure decisions are explained clearly and based on your individual circumstances.