Social care and support

Outside my clinic, what support can I get to help me live with HIV?

Depending on your needs, you may be able to access social care services or other forms or social support.

Social care is about helping people live independent, healthy and fulfilling lives. As with health care, social care services are as varied as the needs of the people accessing them. 

Social care may include:

• Help with doing things in your home (cleaning, preparing food)
• Support with daily life (eating, bathing, dressing)
• Equipment and adaptations to help you be independent in your home
• Residential care or supported living
• Support from a social worker

Not everyone living with HIV will have support needs which are serious enough to need social care.  But social support can be important to staying well with HIV.

Some services provided by local HIV organisations are ‘open access’ or ‘universal’ services, which means that anyone with HIV can approach the organisation directly and ask to use them. The organisation may be funded to provide services to anyone living with HIV in your local area.

The sort of support these services provide may include:

• Support with coming to terms with an HIV diagnosis and disclosing this to family and friends
• Information and advice to help with problems with housing, welfare benefits, financial issues, immigration and accessing NHS services
• Advice on dealing with discrimination and stigma
• Peer support groups, where people living with HIV can meet together to listen to and support each other

Not all people living with HIV will need or be able to get all of these types of help.  It will depend on your needs and how much HIV is affecting your ability to manage daily life. 

This is not an exhaustive list and depending on your needs there might be other ways social care can help you and your family.

To find out about HIV support services in your area, search the NAM e-atlas: http://www.aidsmap.com/e-atlas

Who provides social care?

Your local authority (council) pays for social care in your area . 

If you think you need social care services – for example, if you are disabled and need help at home – you will have to ask your local authority for a needs assessment.¹.  

[1] CARE ACT 2014 – Fact sheet 2 - https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets 

You will be assessed by a social worker or another trained assessor. This could be someone employed be a charity or private company, as long as they have been trained in assessments.  Another option is to do a self-assessment, where you take the lead in identifying your needs and goals.

The needs assessment looks at:

• what your needs are and how this affects your wellbeing (e.g. help with personal care)
• what outcomes you want to achieve (e.g. getting back to work, meeting up with friends more often)
• your current circumstances (e.g. living alone or with family).

The local authority takes the findings from your needs assessment and compares them against a national ‘eligibility framework’ to decide if you are eligible for social care. [R]  Some care services are free but for others the local authority may ask service users to contribute to the cost, depending on their financial situation.

What about carers or family members of someone living with HIV?

People living with HIV may need to be cared for at times in their life, or maybe carers of family or partners.

Under The Care Act 2014, local authorities have a responsibility to also assess the support needs of carers if they appear to have such needs. 

This assessment will look at the impact that caring has the carer.  It will also consider what their goals are for their daily life and what support they need so that they are able to keep working, studying or participating in other activities alongside their caring responsibilities.  This might mean, for example, having someone come in to help with the housework. 

This support is normally provided without charge, but local authorities may ask carers to contribute  to the cost in some situations. For more help and advice for carers: www.carersuk.org

What are my rights when applying for social care?

You have the right to ask for your social care needs to be assessed.  A needs assessment must be given to anyone who “appears… [to have] needs for care and support “”.¹   The local authority must also consider the wider needs of your family and household who may be supporting you at the moment. 

Not everyone is eligible for free care services.  You first have to meet the national threshold for support.  The local authority will also consider your finances and in many cases will ask you to make a contribution to or cover the costs of your care.   You may be able to ask for a “deferred payment agreement”, when charges are delayed and repaid to the local authority at a later date.

You are entitled to ask the local authority to arrange the care and support needs identified in your assessment – even if the local authority is not paying for the services.

Local authorities must provide information and advice on:

• what care and support is available in the area
• how to raise concerns about someone who has care or support needs
• where to get independent financial advice relating to care or support needs.

The Care Act also sets out a process for people who want to move area but need to know that they can get care in their new local authority.

If you disagree with the finding of your community care assessment, you can appeal it.  You can question the findings with the assessor and ask for a review through your local authority’s usual procedures.

Am I guaranteed social care as someone living with HIV?

Not everyone with HIV who has care and support needs will fit the criteria set out in the national eligibility framework. 

However, even though the national framework prioritise social care for those with the greatest needs, local authorities must also make sure that there are services to help people from developing a need for care and support, or delay people deteriorating to the point where they will need long-term care and support.¹ 

What if my local authority isn’t offering the sort of support needed by people living with HIV?

If your area isn’t offering the sort of support you need, you can contact your local councillor or suggest that your HIV support organisation talk to local councillors.  You can also approach your local Healthwatch. Local Healthwatch organisations are a way for local people to have their say on health and social care in their community and to have these views shared with decision-makers. (For more information see ‘How you can improve your services’).