United Kingdom

The United Kingdom is currently accepting people fleeing the war in Ukraine. The two SMA patient organisations: TreatSMA and SMA UK, are offering special support to families with SMA.

Transport

SMA Foundation Poland can help you organise your trip to the UK. We can provide airline tickets and on-site assistance. Please do not hesitate to contact us.

Formalities

Ukrainian citizens must apply for a special visa under the government’s Homes for Ukraine program. Applications should be submitted online at https://www.gov.uk/guidance/apply-for-a-visa-under-the-ukraine-sponsorship-scheme.

Families wishing to relocate to the UK must have a pre-arranged accommodation. The UK government has appealed to the population to offer housing through registration in a special online system. Currently, over 100,000 apartments and rooms for families from Ukraine are being offered.

On their visa application, the family must indicate an apartment from the database in which they want to live, and its owner must accept the family.

Persons with a biometric passport usually receive a visa within a few hours of registration and will be notified by e-mail. People who do not have a biometric passport will be invited to visit a UK Visa Centre abroad; they will also receive information about the documents that need to be presented.

Accommodation

Owners providing their premises for refugees from Ukraine are obliged to provide free accommodation for Ukrainian families for at least 6 months. The UK government pays landlords a small rent for a maximum of 12 months. The owner can expect the families to contribute to utility bills (gas, electricity, water, internet).

SMA Foundation Poland has information on a number of homes offered by SMA families in the UK that are fully adapted to the needs of people with disabilities. Please do not hesitate to contact us.

After arrival, the family must arrange transport to the selected apartment on their own. UK SMA organisations can sometimes help with airport transfers.

SMA treatment

Everyone legally residing in the UK is entitled to receive free healthcare as needed.

Patients with SMA in the UK can receive treatment with Spinraza or Evrysdi regardless of their age or SMA type. This also applies to people fleeing Ukraine. In England, Wales and Northern Ireland, infants and children with SMA type 1 weighing up to 18 kg receive Zolgensma as standard; in Scotland, only children with 2 or 3 copies of the SMN2 gene will receive it. Presymptomatic children across the country are also treated with this drug.

There are 13 large hospitals in the UK that treat SMA. Healthcare is at an advanced level. Hospitals in London, Newcastle, Liverpool, Manchester and Glasgow have long experience of treating SMA.

The UK government funds all of healthcare, including medical devices, orthoses, and rehabilitation equipment.

Social support

Families fleeing Ukraine to the UK have full access to social support, including child benefits, unemployment benefits, and low income benefits. Financial support to people with disability and to their carers is substantial.

A person with SMA can receive a government-funded mobility device (usually an electric wheelchair), an adapted car, and the necessary equipment in the apartment (beds, lifts, etc.). Extra support staff is routinely funded to help children with special needs in kindergartens and schools. There is funding available for additional social activities, especially for children – clubs, sports activities, integration trips. Support for personal assistants for people with disabilities is funded less generously and more difficult to obtain, especially for adults.

SMA community

There are several organisations in the UK founded and run by people with SMA. The two most active are: