Benefits
What benefits can I claim?
There are a number of different benefits checking services available which can help you to explore your benefit entitlement:
● https://www.entitledto.co.uk/
Can I get Personal Independence Payment (PIP) because I have sickle cell disease?
PIP is a benefit for people who have long term health conditions like sickle cell disease. However, it is not based on the condition itself, but how it affects you day to day.
This link explores general PIP entitlement: https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/before-claiming/check-you-are-eligible/
Getting PIP can be challenging. It would be a good idea to talk to a benefits adviser to explore this further.
I have no recourse to public funds. Is there any support I can access?
Someone with ‘NRPF’ status cannot claim any benefit that is classed as a ‘public fund’. There are a small number of benefits that are not classed as public funds. If you meet the other eligibility criteria, you may be able to make a claim for these.
https://www.nrpfnetwork.org.uk
Immigration
I have a skilled worker visa and want to stay in the UK permanently. What can I do?
If you have been living in the UK on a skilled worker visa for more than five years, you may be eligible for indefinite leave to remain (ILR). You can check the requirements and apply online here: https://www.gov.uk/indefinite-leave-to-remain-tier-2-t2-skilled-worker-visa
There is more general information about ILR here: https://www.gov.uk/indefinite-leave-to-remain
My employer has lost their sponsorship licence. What are my options?
If your employment is tied to your visa, for example, if you on a skilled worker visa, you will need to either find a new employer who can sponsor you, or apply for a different visa. There are very strict time limits here, so it is important to act quickly if this has happened.
See https://www.gov.uk/employee-lose-sponsor-licence
If you do nothing and your visa comes to an end, you will become an overstayer. If this happens, you should seek advice from an immigration adviser immediately:
https:// www.citizensadvice.org.uk /immigration/problems-with-a-visa/overstayed-visa
You can use this link to help you find an immigration adviser in your area: https://www.gov.uk/find-an-immigration-adviser
I am seeking asylum in the UK. What support is available?
For Sheffield patients, City of Sanctuary holds a multi-agency drop in on a Wednesday afternoon at Victoria Hall. They can offer a wide variety of support to people who are seeking asylum or have recently been granted refugee status. See https://sheffield.cityofsanctuar y .org/our-work/the-multiagency-drop-in/
Employment
I need to work from home because of my sickle cell. Can my employer refuse my request?
Anyone classed as an employee can make a statutory flexible working request. ‘Flexible working’ can include things like hybrid working and working from home. Employers should consider all flexible working requests.
Acas provides comprehensive guidance on your right to make the request, how to make the request and what to do if your employer denies your request: https://www.acas.org.uk/statutory-flexible-working-requests
My employer doesn’t understand sickle cell disease and doesn’t take my needs seriously
You should discuss your needs with your manager and come up with a plan on how best to support you within your workplace. If you feel that your employer isn’t listening, you could consider providing some support evidence from your consultant that explains your condition and the impacts it may have on your work.
You may wish to consider asking for Occupational Health involvement, so someone external can help to assess your level of need and the appropriate support.
If you are unable to negotiate with your employer, you may need to consider raising a grievance: https://www.citizensadvice.org.uk/work/grievance-meetings/dealing-with-grievances-at-work/
If you feel you are being discriminated against, you can contact the Equality Advisory Support Service: https://www.equalityadvisoryservice.com/
Housing
I have damp and mould that my landlord will not repair
Damp and mould are very challenging housing issues. Advice is different depending on if you are a private or social (council or housing association) tenant.
Private tenant: https://england.shelter.org.uk/housing_advice/repairs/damp_and_mould_in_rented_homes
Social tenant: https://england.shelter.org.uk/housing_advice/repairs/damp_mould_social_housing
I have no recourse to public funds. What housing services can I access?
Homelessness assistance and local authority allocation of housing are both considered public funds.
A person with no recourse to public funds can apply for housing association properties if they apply to the housing associations independently and do not go through a council allocation process.
Main SCD Issues Children
The vast majority of the issues raised above will be relevant to parents with children with sickle cell disease. Below are some more specific questions/issues raised
Benefits
Can my child get Disability Living Allowance (DLA) because they have sickle cell disease?
DLA is a benefit for children, under the age of 16, who have long term health conditions like sickle cell disease. However, it is not based on the condition itself, but how it affects your child day to day.
Entitlement to DLA is based on the level of supervision your child requires as a result of their health condition. If your child’s need is substantially greater than the needs of another child without their health conditions, it is possible that they will qualify for DLA. There are a number of relevant factors to consider, including the age of the child and the frequency of crisis events.
See: https://www.disabilityrightsuk.org/resources/disability-living-allowance-dla and https://contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/disability-living-allowance/
I have no recourse to public funds, can my child get any benefits?
Some benefits relating to children, such as Child Benefit, are based on the immigration status of the parent.
Other benefits, such as DLA, are based on the immigration status of the child.
I have no recourse to public funds. Can I receive the 15 or 30 free hours of childcare?
Entitlement to the 15 or 30 free hours of childcare is based on immigration status. The person applying must have:
one of the following:
● British or Irish citizenship
● settled or pre-settled status
● permission to access public funds
See https://www.gov.uk/free-childcare-if-working/check-youre-eligible
Citizens Advice Contacts for the Region
Sheffield
Advice Line: 0808 278 7820
Chesterfield
Advice Line: 0808 278 7954
Barnsley
Advice Line: 0800 144 88 48
Grimsby
Advice Line: 0808 2505 701
https://www.citizensadvice.org.uk/local/north-east-lincolnshire
Newark
Advice Line: 01623 861769
Retford, Bassetlaw and Worksop
Advice Line: 0300 561 2800
Rotherham
Advice Line: 0808 278 7911
Doncaster
Advice Line: 01302 243057
https://www.cadoncasterborough.org
North Lincolnshire and Scunthorpe
Advice Line: 01724 870941
Newcastle
Advice Line: 0800 448 0721
https://www.citizensadvice-newcastle.org.uk
South Tees
Advice Line: 01642 633877
South Tynside
Advice Line: 0808 2787824
Sunderland
Advice Line: 0808 278 7950
https://www.citizensadvice.org.uk/about-us/contact-us/local-citizens-advice/0014K000009EMJUQA4
Leeds
Advice Line: 0808 278 7878
Hull and Goole
Advice Line: 0808 278 7981
Bradford
Advice Line: 08082 787828
https://www.citizensadvice.org.uk/local/bradford-airedale/contact-us/0014K000009EMN8QAO
York
Advice Line: 0808 278 7895
Scarborough and Harrogate
Advice Line: 0808 278 7900
Huddersfield
Advice Line: 0808 278 7896