The UK MRKH Care Gap

We are here to fight for equal, accessible and equitable healthcare for every MRKHer in the UK.

Join our advocacy group and work here: https://www.mindovermrkh.org/mrkh-change

MRKH care in the NHS is often described in two very different ways depending on where you sit in the system.

For some patients, care can be timely, specialist and well coordinated. For others, access to information, referral routes and psychological and psychosexual support can be unclear or inconsistent.

Both of these experiences are true at the same time. This is what makes MRKH care difficult to describe simply. It is not a system that is absent. It is a system that is uneven. We want to support the NHS, influence wider rare disease policies and NICE guidelines to improve care and patient information across the UK, in line with the women's health strategy.

We are advocating for MRKH and other Differences in Sex development.

In our dedicated Mind Over MRKH community chat group with over 100 MRKHers across the UK, we asked some questions.

50% of 20 respondents in the group said they have sought private therapy.

59.2% of 27 respondents said they do not feel as though they have somewhere to turn that is accessible where they live.

The positives at diagnosis stage is that 100% of those diagnosed in the last 5 years were offered psychological support. However, there were anecdotal comments left in the group stating waiting times could be more than 6 months, therpay did not always come as standard during the diagnosis process, those discharged after diagnosis had to seek re-referral routes, or they didn't feel the services were accessible where they live due to the national centres being based in London. More extensive research is required and we will be working to create an ongoing analysis of research and outcomes.

It has also been recently discovered that only 7 of 42 Integrated Care Boards will fund fertility treatments those with uterine factor infertility when surrogacy is the pathway. We are founding members of the Fight For Surrogay campaign, which will be a core element of MRKH Change initiatives.

A system that does exist and can work well

There are specialist services across the UK that provide high quality MRKH care. These are usually based in tertiary centres and include adolescent gynaecology and DSD multidisciplinary teams.

Where patients access these services, care can include:

• specialist diagnostic confirmation and explanation

• multidisciplinary input from gynaecology, psychology and fertility specialists

• support with vaginal health options where appropriate

• access to counselling and emotional support in some centres

• clearer information and structured follow up in better resourced services

  
  

In these settings, MRKH care can feel joined up and supportive. Clinicians often have specific experience with congenital reproductive differences and can provide clearer guidance.

However, this quality of care is not available uniformly across the country and patient information is not nationally uniform.

A postcode lottery in access and experience

The key issue in MRKH care is not whether services exist, but whether they are accessible consistently.

Access depends heavily on:

• where a patient lives

• whether local clinicians recognise MRKH early

• referral decisions made at GP and hospital level

• proximity to specialist centres

  
  

This creates a postcode lottery where:

• some patients are referred quickly to specialist teams

• others experience delays or repeated investigations

• some never reach specialist services at all

  
  

Even when referral occurs, travel distance and service capacity can affect whether care feels accessible in practice.

Hidden barriers within the system

Alongside variation in access, there are structural barriers that shape patient experience.

1. Referral dependency

Patients often need GP re referral to access specialist services again after discharge. This creates a gatekeeping step that can vary depending on GP familiarity with MRKH.

2. Fragmented care pathways

MRKH involves multiple specialties including gynaecology, psychology and fertility care. These services are not always fully coordinated, which can result in patients navigating different parts of the system independently.

3. Uneven psychological support

Emotional support is not consistently embedded within all pathways. In some areas it is routine and proactive. In others it is optional or accessed only if requested.

4. Inconsistent patient information

MRKH information leaflets and resources vary significantly between NHS trusts. Some are detailed and trauma informed while others are brief or clinically focused without emotional context. There are gaps in clinical wellbeing, intimacy and self esteem information and resources.

5. Transition gaps

Care from adolescent services into adult services is not always structured. Patients may experience reduced continuity of support at a time when long term care needs remain relevant

6. Barriers to IVF funding, 7 out of 42 Integrated Care Boards do not fund fertility treatment where surrogacy is the pathway, a key gap in equality for those with MRKH and those with uterine factor infertility. We will write seperately about this and are part of the founding team of Fight For Surrogacy

The gap between good care and equal care

The result is a system where:

• high quality care exists in specialist centres

• but access is not evenly distributed

• and experience depends heavily on geography and local service design

  
  

This creates a clear gap between what is possible within the NHS and what is consistently experienced by patients.

National policy principles such as those in the NHS Women’s Health Strategy and the Rare Diseases Framework emphasise equitable access, coordinated care and improved patient experience. However, MRKH care is not currently defined by a single national pathway that ensures consistent delivery of these aims.

MRKH Change- working towards system visibility and coordination

MRKH Change, under Rarely Project CIC, has been created in response to these inconsistencies. We work alongside our community voices and wellbeing arm, Mind Over MRKH.

The aim is not to replace clinical services and charities but to support improvement by making variation visible and patient experience central to discussion. We are also on our own journey of optaning a Patient Information Forum tick, to ensure our own information is made with robust processes.

This work includes:

• mapping NHS trust level MRKH and adolescent gynaecology patient information

• analysing Freedom of Information responses to understand pathway differences

• reviewing patient leaflets and educational materials for clarity and trauma informed language

• identifying gaps in psychological and psychosexual support and referral consistency

• building a platform for patient led feedback on clinical documents and information

• aiming towards a future of unified and consistant support and information across the UK.

  
  

The longer term aim is to support more coordinated and consistent MRKH care across the UK in line with national commitments on women’s health, rare diseases and patient centred care.

This includes advocating for:

• clearer and more consistent MRKH and DSD patient information standards

• improved visibility of referral pathways

• better integration of psychological support into routine care

• reduced geographic variation in access to specialist services

• stronger alignment between policy principles and lived experience

  
  

Moving forward

MRKH care in the UK is not a system that is broken in every place. It is a system that works well in some settings and is difficult to access in others.

The challenge is not to start from nothing. It is to reduce variation, improve coordination and ensure that high quality care is not dependent on postcode or service awareness.

MRKH Change exists to help make that gap visible and to support more consistent, informed and patient centred care across the UK. If we can do this for MRKH in the UK, we can learn from this work on a global scale and enhance patient information for marginalised groups and areas.

Our first step has been to request all documentation from every NHS trust. We look forward to working collaberatavly with MRKH advocates and NHS trusts to enhance services for MRKH.

Join us! Head to MRKH Change.