Protect Parental Rights in Critical Care Decisions.

Our official government petition is now live. Add your name to demand change.

When a child is seriously ill, no parent should be silenced or excluded from decisions about their care. But right now in the UK, parents can be shut out of life-changing medical decisions, without any legal right to be involved, or even heard.

We’re calling on the UK Government to change this. Parents must have a voice in the critical care decisions that affect their child’s life.

Sign the official petition today and help us protect parental rights.
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Introduction: Why This Campaign Matters

Imagine being told that, despite being your child’s parent and legal guardian, you have little to no say in their medical treatment. Imagine being pushed aside while doctors, hospital administrators and even the courts decide what happens to your critically ill child often against your wishes.

This is the reality for many families in the UK today. Parents who should be making life altering decisions for their children are instead being sidelined, ignored and even forced into exhausting legal battles to have their voices heard.

The Tafida Raqeeb Foundation is launching this campaign to demand urgent legal and medical reforms that restore parents’ rightful role in making decisions for their children’s care. This issue is not theoretical, it has already happened to families across the country. It could happen to you.

The Problem: Parents Are Being Sidelined in Critical Care Decisions

The UK healthcare system often works well, with many doctors and hospitals actively involving parents in decision-making. However, in too many cases, when a child’s treatment becomes complex or controversial, parents find themselves excluded from the process.

How Does This Happen?

Doctors and hospitals can override parental decisions. In cases where doctors believe a certain treatment is not in the child’s best interest, they can refuse to provide it regardless of what the parents want instead of treating parents as partners in care, they are often treated as obstacles or adversaries.

The NHS and Children and Family Court Advisory and Support Service (Cafcass) can take over decision making. If there is a disagreement, NHS bodies and Cafcass escalate the case to court, where a judge not the parents make the final decision. Parents are often given limited legal representation, while hospitals have teams of high powered lawyers at their disposal.

Parents are forced into traumatic legal battles. Instead of focusing on their child’s wellbeing, parents are dragged into costly and emotionally devastating court cases. Even when families find alternative treatments or specialists willing to help, UK hospitals often refuse to release the child for treatment elsewhere. The system is adversarial rather than collaborative. Rather than prioritising mediation and dialogue, hospitals often act unilaterally shutting parents out and this creates conflict.

Our Proposals for Change

1. Strengthen Consent Frameworks
Promote clearer guidance to doctors which explains that, absent a court decision:

  • Parents, not doctors have the legal authority to make decisions for children lacking capacity, except in genuine, unforeseen emergencies, and
  • Absent a genuine, unforeseen emergency, doctors have no power to make medical treatment decisions for a child lacking capacity and that this power resides solely with parents.

2. Amend NHS Procedures

  • Require doctors to consult parents as equal partners and prioritise joint decision making.
  • Mandate a second opinion from an agreed specialist in treatment disputes.
  • Require NHS bodies to offer mediation before seeking court intervention.

3. Amend the Law to Support Parental Decisions

  • Create a legal presumption that courts respect parental treatment decisions unless the child is clearly dying.
  • Reform Cafcass guidance to give parents’ voices equal weight in critical care cases.
  • Require NHS bodies to fund reasonable legal representation for parents in court cases.

4. Invest in Paediatric Rehabilitation Services

  • For the NHS to be under a legal duty to develop accessible, high-quality paediatric neuro-rehabilitation services to give children the best chance for recovery and provide families with essential support.

5. Allow Hospital Transfer

  • Ensure children have the right to transfer to another hospital willing to provide care.

The Tafida Raqeeb Foundation has been a tireless advocate for family centred care and improved rehabilitation services for children.
Now, it’s time for the Government to act. No family should face the nightmare of being sidelined in their child’s fight for life.

Sign the petition today. Let’s demand a system that hears parents, values children, and protects families.

Real Life Impact: The Case of Tafida Raqeeb

This is not just a theoretical problem. It has already happened to multiple families, including the case of Tafida Raqeeb a vibrant young girl whose life changed forever due to a sudden brain injury. Her parents determined to give her the best chance of survival, found a specialist team in Italy willing to treat her. However, the UK hospital refused to let her go and took the case to court to prevent her transfer. Her parents had to fight an exhausting legal battle just to give their daughter a chance. Thankfully, they won but no family should have to endure what they went through. This campaign is about ensuring that no parent is ever shut out of their child’s care again.

How you can help.

This campaign can only succeed with your support. Here’s how you can take action today: Sign the Petition. We need thousands of voices calling for change. Add your name now to demand that the UK Government takes action.

Write to Your MP. Your local MP has the power to push for change. Use our template letter below to urge them to support these crucial reforms

Donate to the Tafida Raqeeb Foundation. Help us continue our work advocating for families and pushing for policy change.

Spread the Word. Share this campaign on social media using the hashtag #ProtectParentalRights. Talk to friends and family about why this issue matters. Encourage others to sign the petition and take action

Stay Connected with the Campaign

Join our supporter list and stand with families fighting for a voice in their child’s care.

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Your support helps us speak louder.

Write to your MP to protect parental rights and critical care.

Download Letter
Find Your Local MP

Dear MP,

Protecting Parental Rights in Critical Care for Children
I am writing to you as a concerned constituent to request your support for an urgent and necessary reform in the way critical care decisions are made for children in the UK. The current legal and medical frameworks often marginalise parents at a time when their voices should be central in decisions concerning their child’s care. The Tafida Raqeeb Foundation, along with many families, is calling on the Government to take immediate action to ensure that parents are treated as equal partners in these critical decisions.
Cases like that of Tafida Raqeeb, whose parents had to fight through immense legal and emotional struggles just to secure the right to continue her treatment, highlight the systemic failures that exist within our medical and legal systems. Too often, parents find themselves sidelined, unable to advocate effectively for their child, and even forced into legal battles against powerful institutions like the NHS and Cafcass. This is neither fair nor compassionate, and it is a failure of the system that must be addressed.
The Reforms We Urge You to Support
We are calling on the UK Government to implement the following changes to protect parental rights and ensure a collaborative, child-centred approach in medical decision-making:
1. Strengthen Consent Frameworks:
Promote clearer guidance to doctors which explains that, absent a court decision:
  • Parents – not doctors – have the legal authority to make decisions for children lacking capacity, except in genuine, unforeseen emergencies.
  • Absent a genuine, unforeseen emergency, doctors have no power to make medical treatment decisions for a child lacking capacity, as this power resides solely with parents.
2. Amend NHS procedures to require NHS bodies to involve parents in decision-making:
  • Require doctors to consult parents as equal partners and prioritise joint decision-making in care plans wherever possible.
  • Mandate that NHS bodies obtain a second opinion from a mutually agreed specialist in case of disputes about treatment options.
  • Mandate NHS bodies to offer parents mediation to resolve disputes before seeking court authority to override parental decisions.
3. Amend the law to support parental decision-making if a case comes before the Court:
  • Establish a legal presumption that parental wishes on treatment decisions should be respected unless clear evidence shows the child is deteriorating.
  • Reform Cafcass guidance to ensure parents’ voices are given equal weight in critical care cases.
  • Require NHS bodies who apply to court to fund a reasonable level of legal representation for parents.
4. Invest in Paediatric Rehabilitation Services:
  • The NHS should be under a legal duty to develop accessible, high-quality paediatric neuro-rehabilitation services to give children the best chance for recovery.
5. Allow children to be transferred to other institutions:
  • Children in need of medical treatment should have the right to transfer to another hospital if that hospital is willing to accept and care for them. No family should be forced to watch their child suffer due to bureaucratic barriers.
Why Your Support Matters
No parent should ever have to endure the agony of being shut out of decisions about their child’s care. This is not just about one family’s experience; it is about ensuring that no other family has to go through the same ordeal.
I urge you, as my elected representative, to support this campaign by:
  • Raising this issue in Parliament and advocating for legislative reform.
  • Meeting with representatives from the Tafida Raqeeb Foundation to discuss these reforms.
  • Supporting efforts to improve mediation services and independent assessments in critical care cases.
I would appreciate the opportunity to discuss this matter further with you. Please let me know a convenient time to meet or speak.
Thank you for your time and consideration. I look forward to your response.
Yours sincerely,

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