Social support

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

Depending on your needs, a range of social support may be available, including welfare benefits, housing and social care services.  There are many types of welfare benefits available including some specifically for people with long-term health conditions such as HIV. To find out if you may be eligible for any of these, visit www.gov.uk or talk to a specialist HIV support service. You can also find out about help with housing this way.  There are local HIV support organisations around the country, and you can also get information from national organisations including: 

• NAT - www.lifewithhiv.org.uk
• Terrence Higgins Trust - THT Direct on 0808 802 1221 andMyHIV  www.myHIV.org.uk
• NAM- http://www.aidsmap.com/e-atlas
• Positively UK - http://positivelyuk.org/

Who provides social care?

Your local authority (council) pays for social care in your area . But not all providers of social care are social workers or work for the local authority. Some community and voluntary organisations (charities) are paid to provide social support to people living with HIV.  This includes ‘peer support’, which means getting support from other people living with HIV, often at regular group meetings.

You can find local HIV services by asking at your HIV clinic or searching online:

• http://www.aidsmap.com/e-atlas
• http://www.myhiv.org.uk/

Or call THT Direct on 0808 802 1221 (10am-8pm Monday to Friday, free to call from all UK landlines and most mobiles).

How do I get support?

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 (see ‘Who Provides Social Care?’).  The organisation may be funded to provide services to anyone living with HIV in your local area.

If you need more intensive help – for example, if you are disabled and need help at home – you will have to ask your local authority for a needs assessment.¹   Depending on the outcome of this assessment, you may be eligible for local authority-funded social care support services.

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 personal budgets? Is this the same as direct payment?

The council decides how much funding you will get and then you can choose how to spend it from a range of options. For example, if you need someone to help you in your home, you can choose which care provider comes in to do this.  You might also spend it on aids and adjustments to your home.  It might help with getting around, for example, transport to a peer support group.  The key is that you will not have to use the services provided by the council – it’s up to you.

Not all personal budgets will be direct payments into a bank account. You can have your funding held by the local authority or a chosen service provider, who will spend it for you when you have chosen the services you want. You can also have your budget managed for you by a family member, friend or carer.  

Some local areas may not yet have full personal budget systems in place. But even here, you are still entitled to ask for direct payments to pay for your care and support.¹ 

What are my rights when applying for support services?

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’).

What is social care and how can it help me?

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. 

The sort of support some people living with HIV might need includes:

• 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
• Help in your home (e.g. cooking, cleaning, shopping, bathing).

Social care services available to people living with HIV include:

• Peer support groups, where people living with HIV can meet together to listen to and support each other
• Contact with an HIV specialist social worker
• Practical advice and advocacy from an HIV support organisation.
• A support worker or carer to help you in your home and/or when you are out and about.

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.