Our position statements

 Shine’s role is to guide parents‑to‑be to explore all options with their Fetal Medicine Team and/or the Fetal Surgery Team at University College Hospital London.

Shine is not involved in making decisions about whether to proceed with prenatal surgery.  These sit with the Fetal Surgery Team and parents-to-be, but we are here to offer information, guidance, and emotional support throughout.

 

Termination of pregnancy

In England, Wales and Northern Ireland, termination of a pregnancy (or ending a pregnancy) affected by a disability is a legal right.  Shine supports parents‑to‑be in a non-judgmental way so they can make the decision that is right for them. For those who consider and/or decide on a termination for medical reasons (TFMR), this can be very isolating.  Shine offers a confidential service to talk about all options and will remain a source of support following any choices made.

 

Social and Medical models of disability

Shine recognises that both the social and medical models of disability provide valuable and interconnected perspectives on the experiences of our community. The social model highlights the barriers created by society—physical, attitudinal and systemic—that exclude disabled people. The medical model focuses on clinical needs, health management, and the lived reality of medical conditions.

By working across both models, Shine is able to provide holistic support that addresses not only the societal barriers faced by disabled people but also the clinical, developmental and health‑related challenges associated with spina bifida hydrocephalus, and Normal Pressure Hydrocephalus (NPH). Using both models strengthens our ability to advocate, educate, and deliver services that reflect the experiences of our members.

 

Assisted dying

Shine does not have a position on assisted dying as our role is to respect the personal decisions of the individuals we support, at the same time as ensuring there are appropriate safeguards in place to protect the more vulnerable of our members.

 

Head circumference measurements to detect hydrocephalus in infants

Head circumference measurement is important in detecting hydrocephalus in infants. Current RCPCH guidelines recommend routine measurements around birth, at the 8‑week check, and any time thereafter if concerns arise.

Currently, after the 8-week check, head circumference is not normally measured unless there are concerns about head growth or development. Only measuring when a change has been noticed puts a huge responsibility on parents/carers to notice any changes, understand the significance, and convince their healthcare professionals that there is an issue. Leaving measurement until there are concerns about development could mean hydrocephalus is detected at a later stage than necessary, with possible neurological consequences of this delay.

Shine would welcome a review of the current guidelines, including learning from those other nations with a more proactive approach.

 

Specialised commissioning of health services for adults with spina bifida

Shine remains concerned by the fragmented nature of health services for adults with spina bifida and by care models that require people to become unwell before referral. Spina bifida is uncommon and complex, requiring specialist expertise. Adults may need proactive monitoring and coordinated support due to the cognitive and physical impacts of their condition.

Shine strongly believes that multidisciplinary team (MDT) clinics should be specially commissioned across the UK to meet the needs of adults living with spina bifida. Properly commissioned MDT clinics would help prevent serious health issues, reduce unplanned hospital admissions, ensure equity of access, and provide coordinated, expert care.

In the absence of specially commissioned services, we will endeavor to work with individual NHS health teams across England and Wales to support the setting up of MDT clinics for adults with spina bifida.

 

Human Rights, Solidarity, and Inclusion

Shine is committed to upholding the rights, dignity and inclusion of all people. We recognise that disability justice cannot be achieved in isolation and that our community is diverse—encompassing people of all races, ethnicities, faiths, sexual orientations, gender identities and nationalities. Our commitments are reflected in our values and policies and in the way we work across the organisation.

We stand against racism, support LGBTQ+ disabled people, oppose anti-semitism and Islamophobia, advocate for the protection of civilians during humanitarian crises, and recognise that disabled people are disproportionately affected by global challenges including climate change. We remain committed to justice, compassion, and accessibility for all.