My Care My Voice

It’s a good idea to tell your GP about your HIV (or register with a GP if you don’t have one). ICON-A While your HIV clinic will monitor your HIV and prescribe the HIV medication you need, your GP is still the best place for other health issues (e.g. flu, minor infections, elevated blood pressure). ICON-A

If your GP knows your HIV status and what medication you are on, they can be sure not to prescribe anything that will interact badly with it. It will also help them to recommend services which may be helpful to you. For example, people living with HIV can have a free flu vaccine¹ ICON-R and women living with HIV are recommended to have an annual cervical smear² ICON-E

However, there is no obligation to tell your GP about your HIV. (For more information see Confidentiality and Disclosure).

And because HIV clinics are open access, you will not need to be referred by a GP to get HIV treatment. ICON-R

For more practical advice on GPs and HIV try NAM's resource, GPs and other primary care.

[1] Under the category of people with reduced immunity  http://www.nhs.uk/Conditions/HIV/Pages/living-with.aspx
[2] BHIVA/BASHH/FRSH Guidelines for the management of the sexual and reproductive health of people living with HIV infection 2008

Your HIV doctor is the expert in HIV, but GPs have a lot of experience with a wide range of everyday health issues and long term conditions. Many people living with HIV have other, more common, conditions such as high blood pressure, diabetes or depression, which GPs deal with every day. They prescribe the medication you need for these conditions and refer you to specialist doctors when needed. ICON-R  Some GP surgeries also run special ‘clinics’ for people who want help and advice on health-related issues such as diet and quitting smoking. ICON-A 

GPs are also very experienced in the care of older people, so are increasingly important in providing care as people living with HIV age.  They can also help manage common side-effects of treatment, such as gastro-intestinal problems. ICON-A  

It will normally be easier and quicker to get an appointment with a GP to deal with these sorts of problems as they happen, rather than wait for your next appointment with the HIV clinic.  Increasingly, GP practices have longer opening hours to make getting an appointment easier. ICON-A

You can register with any GP practice in your local area, provided they have space on their list.¹ ICON-R

Contact the practice you would like to go to and ask to register. They will ask you to fill in a form called the GMS1. They may also ask for proof of identity (such as a passport or driving license) or proof of where you live (such as a bill sent to you at your home address).

The GP practice may ask you for your NHS medical card or your NHS number, but you don’t need either of these to register with a GP or to get NHS treatment.² ICON-R

[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx 
[2] http://www.nhs.uk/chq/Pages/1095.aspx?CategoryID=68&SubCategoryID=158

GP practices must accept registrations from people who live in the local area (called a ‘catchment’ area), unless they have run out of space on their patient list.

GP practices now also have the option of registering people who don’t live in the catchment area – for example, people who work nearby.  This is voluntary – GP practice don’t have to register people from outside the area – but if they refuse your request, they should give a reason.¹

[1] NHS Choices http://www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/patient-choice-GP-practices.aspx 

Overseas visitors are able to register with a GP, even if they are not entitled to free hospital care.¹ ICON-R Charging rules which apply to hospital services do not apply to GP services, which are free at the point of use.¹ ICON-R  You do not have to have been resident in the UK for any minimum time to be allowed to register.¹ ICON-R 

Some GP surgeries will ask to see a passport for proof of identity but immigration documents are not a requirement of registering for primary care.¹ ICON-E   If the surgery you are trying to register insists on this sort of documentation, try another one or talk to your local HIV support organisation who might be able to help you register. ICON-A

[1] BMA http://bma.org.uk/practical-support-at-work/gp-practices/overseas-visitors-and-primary-care

Anyone living in the area served by the GP practice should be able to register, unless the GP practice list is full. A GP practice cannot refuse to register you because of your HIV status, race, gender, sexual orientation, age or religion.¹ ICON-R  If a GP practice will not register you, you can ask them to provide you a reason for the refusal in writing. 

[1] Handbook to NHS Constitution, March 2013. 
http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

GP practices have different ways of managing demand for appointments.  So you may find you need to ask for an ‘emergency’ appointment, call or arrive early on the day to be sure of seeing a doctor urgently. You could also try an NHS walk-in centre , which can help with things like infections, minor injuries, stomach upsets and emergency contraception.  Walk-in Centres are normally nurse-led.

You can ask to see a specific GP every time you need to see a doctor and your GP practice should try to make this happen.1 ICON-R  This can help build up a good relationship with your GP and stop you having to explain everything multiple times.  However, you may have to wait longer for an appointment – waiting time targets do not apply to named GPs.
You can also specify if you would like to see a male or female GP, although again you may have to wait a little longer to see your preferred doctor.1 ICON-R

[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx 

Some receptionists will ask why you need to see the GP when you ask for an appointment. This is normally to check whether your health problem or question could be dealt with by another healthcare professional, such as a practice nurse. However, you don’t have to give any details if you don’t want to. You may want to tell the receptionist that your GP is helping you manage your long-term health condition, and leave it at that. ICON-A

Likewise, if you have gone to your GP for a test which is recommended for people living with HIV or to access the seasonal flu vaccine (which is free to people living with HIV), it should be enough to tell the receptionist that you meet the eligibility criteria for the test or vaccine - and that you will discuss the details with the GP or practice nurses if necessary. ICON-A

If you have told your GP about your HIV, this will normally be recorded somewhere on your patient record, reception staff may sometimes see this. However, only those who need to know will access this information and only on a need to know basis.

All NHS workers are bound by a duty of confidence, not just clinical staff. Receptionists and other administrative staff are contractually obliged to show regard to the NHS Code of Practice on Confidentiality and could face dismissal if they were to breach the confidentiality of a patient. ICON-R

Good communication between your GP and your HIV doctor is very important. For example, your GP will want to know what medication you are taking, so they don’t prescribe you anything that would react badly with you or interact with your HIV medication. When you visit your GP, they may ask you about your key monitoring information, like your CD4 count and your viral load. They may also help you with any side effects of treatment you are taking. But the major aspects of your HIV care, including treatment decisions, will remain with your HIV doctor.¹ ICON-E  If you have any concerns about how the care provided by your GP fits in with your HIV specialist care, ask your HIV doctor to talk to your GP. ICON-A  If you have disclosed your status to your GP, your HIV doctor should already be in touch with them at least once a year to make sure both doctors are up to date with your treatment and care.¹ ICON-E

[1] BHIVA Standards of Care – Standard 3 - Provision of outpatient treatment and care for HIV,and access to care for complex comorbidity.  http://www.bhiva.org/standards-of-care-2012.aspx

Not all GPs are always confident treating people living with HIV. However, they should be able to manage your non-HIV care and should not send you back to your HIV doctor for routine health problems, ‘just in case’. ICON-E When you are first diagnosed with HIV or first disclose your HIV status to your GP, they should speak to your HIV doctor about your treatment and care and anything they should be aware of. You can also ask your HIV doctor to telephone your GP.  ICON-A

One of your GP’s concerns may be around prescribing other medications which may interact with your HIV medication. This can lead either to medication not working properly, or to side-effects. For example, some cholesterol drugs interact badly with common HIV medication and some types of the hormonal contraceptive pill (The Pill) will not be as effective when taken alongside some HIV medication (see also Sexual and Reproductive health section).

However, your GP can access free guides which explain what they should and shouldn’t prescribe, depending on your HIV treatment.  They should also be in contact with your HIV doctor or the pharmacists at your HIV clinic about the medication you are taking and any current issues with your HIV care. 

There are also guides and training available for GPs to help them provide good treatment and care for people living with HIV. You could ask your HIV doctor to recommend these to your GP, or bring a copy yourself. ICON-A

If your GP still keeps sending you back to your HIV clinic for routine health problems, you can ask your HIV doctor to speak to them.  You might also want to find another GP who is more confident with your care – fellow patients at your clinic or your local HIV organisation might be able to recommend a GP.  ICON-A

GPs normally assume that there is implied patient consent to share relevant medical information with other parts of the NHS, when referring you for other care (e.g. hospital services).  As HIV is considered relevant to almost all aspects of your care, your GP will routinely share this information unless you ask them not to.  

Your GP is not to tell anyone outside of the NHS about your HIV status without your consent.¹ ICON-R  This includes an employer, your children and insurance companies.

If you do consent to have information shared (e.g. to apply for insurance) the GP should only provide information that is relevant to the request. Only rarely will it be necessary to send the whole of your patient record, this is the case for certain benefits requests and for some solicitors' requests. Ask your GP if you have any concerns about how much detail they are sharing, and if this is necessary. ICON-A You have a right to see a copy of the information that is shared.  ICON-R

(For more on confidentiality see Confidentiality and Disclosure).

[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx 

‘Secondary care’ is a term used in the NHS to talk about health services in hospitals and clinics –from doctors and nurses who are specialists in certain types of healthcare.  ‘Primary care’ on the other hand, refers to GPs, pharmacists and dentists who are usually the first (primary) point of contact. To get most secondary care services you will need to be referred from primary care.

It is quite likely that at some stage you will need to access not just your HIV clinic, but also some other part of the health service. For some of these other aspects of healthcare there are ‘agreed care pathways’. This means that there are good links between the care in your HIV clinic and the other services.

HIV clinics should have agreed care pathways with:¹ ICON-E 

• sexual health services
• reproductive health and maternity services
• management of other non-HIV health needs including Hepatitis, TB as well as heart, liver, kidney and brain health
• psychological support
• drugs and alcohol services
• community and voluntary sector (charity) services

For referral to other specialised care, you will probably have to go to your GP. ICON-A

[1] BHIVA Standards of Care – Standard 3 - Provision of outpatient treatment and care for HIV, and access to care for complex comorbidity.  http://www.bhiva.org/standards-of-care-2012.aspx

When the HIV clinic decides you need care from another part of the healthcare system, it will either refer you directly or ask you to go to your GP, who will then refer you on.¹ ICON-E  (For information on how your personal information will be shared, see Confidentiality and Disclosure).

If you are seeing different doctors, each should know what the other is doing in terms of your treatment and care. Communication between different clinics should be efficient and timely. They should have plans in place to make sure that this happens.

The ‘care pathways’ (see ‘Will my HIV clinic refer me to other healthcare’, above) which your doctors are using will be made public. You should be able to find them if you want to see how different parts of the healthcare system are working together.

If you have concerns that this is not working in your area, talk to someone at your HIV clinic, or your GP to find out more. You could also ask for help from your local HIV voluntary organisation. Your local Healthwatch organisation should also be able to show you how to find out more about care pathways in your area.

[1] BHIVA Standards of Care – Standard 3 - Provision of outpatient treatment and care for HIV, and access to care for complex comorbidity.  http://www.bhiva.org/standards-of-care-2012.aspx

There are some waiting time limits which the NHS promises to keep.¹ ICON-R  There are also commitments to prompt access to specific health services in other Guidelines and Standards.² ICON-E

We don’t list all the waiting time pledges here, but some which may be of particular interest are:

• appointment with a cancer specialist within 2 weeks of referral¹ ICON-E
• for non-urgent psychological support needs, access to an appropriate service within 3 months. (Where there is a risk of harm someone should be seen immediately, including outside of business hours)² ICON-E
• if you need to go into hospital as an inpatient (staying in a hospital ward) for your HIV care you should be admitted within 24 hours of referral.³ ICON-E

The Handbook to the NHS Constitution also states that it is best practice to offer appointments at a sexual health clinic within 48 hours.¹ ICON-E

[1] Pledge in Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx 
[2] BPS/BHIVA/MEDFASH. Standards for Psychological Support for People Living with HIV http://www.bhiva.org/StandardsForPsychologicalSupport.aspx
[3] BHIVA Standards of Care – Standard 6 – Psychological care.  http://www.bhiva.org/standards-of-care-2012.aspx. 

HIV care is freely available to everyone living in England, regardless of their immigration or residency status.¹ICON-R  But some migrants might be asked to pay for the other hospital care they need.  There are many exemptions so there are only a small number of migrants who are likely to be affected.² ICON-R Those affected include:

• refused asylum seekers who are not on Section 95 and Section 4 support
• undocumented migrants (people without papers)
• short-term visitors and tourists.

Even if you are charged for using the NHS, you should always get immediately necessary or urgent care without delay.  This means that if your condition is life threatening or could become life threatening without help, the hospital should treat first and charge later – even if you are not currently able to pay the bill.  You will then receive a bill later.³ ICON-R

For more information see NAT's factsheet, Who has to Pay?

[1] The National Health Service (Charges to Overseas Visitors) Regulations 2012. https://www.gov.uk/government/publications/hiv-treatment-for-overseas-visitors-in-england-from-1-october-2012
[2] The National Health Service (Charges to Overseas Visitors) Regulations 2011. http://www.legislation.gov.uk/uksi/2011/1556/made 
[3] Guidance on Implementing the Overseas Visitors Hospital Charging Regulations 2011 https://www.gov.uk/government/publications/guidance-on-overseas-visitors-hospital-charging-regulations

HIV is treated with a combination of medications called antiretroviral therapy (also known as ART or HAART).  These must be prescribed by a suitably qualified doctor or nurse who will use the BHIVA treatment guidelines to help decide what medication is right for you. ICON-E

You should receive information on: ICON-E

• how well treatment works and its safety
• the different benefits and risks of different treatment options, including potential side-effects 
• the importance of 'adherence' to your medication (taking it as recommended).

Your doctor or nurse should also talk to you about how HIV treatment can best fit with your personal circumstances. This includes: ICON-E

• any other physical or mental health issues you may have
• how easy you will find it to take your medication during the day
• any food restrictions that apply to the medication (these are rare).

After getting information about your treatment options, you can ask to have some time to think about it before starting treatment. ICON-E

As well as getting information from your doctor, nurse and other staff at your HIV clinic, you can find out more from independent and community-based organisations who are expert in treatment, including the following:

• NAM – provides independent, clear and accurate information about HIV including treatments in a variety of formats. www.aidsmap.com 
• HIV i-base – is an information and advocacy group led by people living with HIV committed to providing timely HIV treatment information to HIV-positive people and to health care professionals. www.i-base.info

There are a number of reasons why you or your doctor might suggest changing your HIV treatment. 

Your doctor might suggest switching to a different combination of drugs if your routine blood tests show that the treatment is not working as it should.  Your doctor will then give you information about alternative treatment options.

You might also want to switch treatment because it is causing unpleasant side effects.  Talk to your doctor about the side effects you are experiencing and the impact these have on your everyday wellbeing, and ask if there are any alternative treatment combinations which you could try.

For more information:

• HIV i-base have produced a guide for people living with HIV on changing treatment
• NAM have factsheets on changing treatment due to side-effects.

You can collect your HIV medication in person at the pharmacy in your HIV clinic or the pharmacy in the hospital in which your clinic is based.

You can also choose to have your medication delivered through a ‘home delivery’ service (also called ‘local delivery’).  Despite the name, some delivery companies will deliver to work places, local post offices and local branches of high street pharmacies, as well as your home. All deliveries will be unmarked so it will not be possible to know from the packaging or van that the delivery is HIV medication.  

Adherence is a term doctors and nurses use to talk about how well you are managing to take your medication as prescribed – at the right time of day, every day, and following any specific instructions (e.g. taking with food).  If you don’t take your medication as prescribed, the HIV in your body can change and become ‘resistant’ to the drugs. This means that medicines you are taking will no longer be effective at managing your HIV. This limits your treatment options for the future. Taking your medicines every day at the right time in the right way is the best way to avoid this happening. ICON-A

You will be asked at each clinic visit about how you are adhering to your medication.  If you are finding it difficult you should be offered support. ICON-E

Adherence is particularly challenging when you are having problems with your mental or emotional wellbeing, so your clinic should also be asking you about this side of your health and referring you on to support as needed (see also – Other Doctors I See). ICON-E You can also ask for support with adherence yourself at any point.

Clinical trials and other research into HIV treatment and care are very important for increasing our understanding of HIV and how it affects people, and knowing the best ways to prevent and treat it.  Volunteering to join a trial can also be a good opportunity for individual patients to get access to new HIV medications or find out more about aspects of your health which are not covered in your usual clinic visits. 

HIV clinical trials must follow strict ethical guidelines and participants are given dedicated support during the study.

Your doctor might tell you about opportunities to take part in clinical trials, or there may be posters in your clinic.  If you are interested in taking part in trials you can tell your doctor. 
If you want to know more about research into new HIV treatments, you can join the UK CAB HIV treatment advocates network.

Participating in a clinical trial is not for everyone, and you should not feel obliged to take part. Trial participation is always voluntary and should not affect your normal care if you refuse. You will be asked to sign a consent form for many studies, outlining any potential risks and what will be asked of you. You can change your mind and withdraw your consent at any stage even  if you have agreed already to take part.

BHIVA provides guidelines to help your HIV doctor decide which medication to prescribe for you. ¹ ICON-E  Your doctor should provide you information about it including any possible side-effects.¹ ICON-E  You can ask them at any point if you have any concerns about your medication or are finding it hard to take it as prescribed.

For any non-HIV health problems, you have the right to any clinically appropriate medication or other treatment which has been recommended by NICE in a technology appraisal, which your doctor agrees is right for your case.² ICON-R  NICE is the National Institute for Health and Care Excellence.  NICE considers all the evidence about the possible medications or treatments for a health condition and then produces technology appraisals. (Remember that HIV medication is not covered by NICE). 

You can also talk to your doctor if you have any concerns about the medication you are already being prescribed. ICON-A You do not have to agree to take any specific drug which you believe is not right for you.

[1] BHIVA Guidelines for the Treatment of Adults with Antiretroviral Therapy 2012 http://www.bhiva.org/TreatmentofHIV1_2012.aspx 
[2] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

To collect any medications your GP prescribes, go to your local high street pharmacy.  You may have to pay a prescription charge for these.¹ ICON-R  The current prescription charge is £8.05.  If you need to pick up prescriptions a lot (more than 15 a year), you may find it better value to buy a Prescription Prepayment Certificate.
There are also exemptions to prescription charges. You are entitled to free prescriptions if you are^1,2 ICON-R:

• getting income support, income-based Jobseekers Allowance or income-based Employment and Support Allowance
• over 60; under 16; or aged between 16 and 18 and in full-time education.
• pregnant or have had a baby in the past 12 months, and have a MatEx certificate
• living with a medical condition or disability which entitles you to a MedEx certificate
• an asylum seeker receiving section 95 or section 4 support

(Remember that prescription charges are not the same as the NHS charges for treatment which some migrants are asked to pay, which must cover the whole cost of treatment.)

[1] http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx 
[2] https://www.gov.uk/asylum-support 

Pharmacists are highly skilled health professionals who are experts in the safe and effective use of medicines. Like doctors and nurses, they keep up-to-date with new research and developments in medicine. ICON-E

Most hospitals which have large HIV clinics also have a specialist HIV pharmacy service. These services will ensure that you are dispensed the HIV medicine prescribed by your HIV doctor, and they can help you in other ways as well. ICON-A

In some HIV clinics, specialist pharmacists will be very involved in the care of people coming for routine appointments.  Pharmacists who are qualified ‘independent prescribers’ will be able to prescribe HIV medication. ICON-E

The HIV specialist pharmacist is a really good source of advice and information about the questions you might have about your HIV medicines. Your pharmacist should be able to answer your questions about: ICON-E

• taking your HIV medication
• storing your HIV medication at home
• understanding and managing side-effects
• avoiding serious interactions between your HIV medication and other medicines you are taking (e.g. over-the-counter medications, the contraceptive pill or medications prescribed by your GP or other prescribers)
• avoiding serious interactions between your HIV medication and herbal medicines or natural supplements you are taking
• avoiding serious interactions between your HIV  medication and any recreational drugs that you are taking
• advice on travelling abroad with your HIV medication
• what to do in an emergency e.g. if you lose your HIV medication or don’t have enough to last until your next appointment.

Some specialist HIV pharmacists also run ‘clinics’ to support people who are finding it difficult to adhere to their HIV medication.You can find out about these extra pharmacy services at your HIV clinic. ICON-A

You should receive care and support which promotes your mental and emotional well-being and meets your needs as someone living with HIV.¹ ICON-E

This means you can expect properly trained staff in your HIV clinic to check up on your mental and emotional well-being on a regular basis to ensure any needs can be identified and met.¹ ICON-E

When you are first diagnosed, you should be offered appropriate psychological and emotional support ideally within 48 hours of diagnosis and no later than 2 weeks after diagnosis. Staff should also assess your mental, cognitive and emotional well-being within 3 months of you getting your HIV diagnosis, and at least once a year after that.¹ ICON-E

But your healthcare team should also be checking that you are OK during times which are known to be stressful or difficult such as relationship breakdown, bereavement and periods of financial stress.² ICON-E

You can also raise issues about your mental or emotional state with your HIV clinic at any time. For example, if you are feeling stressed, depressed or anxious. Your HIV clinic will make sure you are properly assessed and you get the help and support you need.² ICON-E

You can also ask for help from HIV community and voluntary organisations (charities).  Many have emotional support services such as peer support (getting help from other people living with HIV) and counselling. In most cases you can contact these directly.  Your clinic may have posters or other contact information or you can go online to find one in your local area.

[1] BPS/BHIVA/MEDFASH. Standards for Psychological Support for People Living with HIV. http://www.bps.org.uk/standards-psychological-support-adults-living-hiv 
[2] BHIVA Standards of Care – Standard 6 – Psychological care.  http://www.bhiva.org/standards-of-care-2012.aspx

You should receive psychological support which is suitable for your needs.  This may be provided by your HIV clinic or you may also be referred to other professionals who can help. In some areas there may be HIV-specific services but in others you will be referred to general community mental health services.¹ ICON-E

There are Standards for Psychological Support for Adults Living with HIV which outline the range of services which may be relevant to you. This covers a full spectrum of psychological and emotional support from attending a peer support group to seeing a psychiatrist. You can also download a patient leaflet about the Standards which explains what support you should be able to access.

The Standards make clear that sometimes psychological support comes from peers (other people living with HIV) and community providers (such as local HIV charities), as well as healthcare professionals.

[1] BPS/BHIVA/MEDFASH. Standards for Psychological Support for People Living with HIV. http://www.bps.org.uk/standards-psychological-support-adults-living-hiv

As part of your HIV care your clinic will also make sure that your general sexual health is as good as it can be. Your sexual health is very important. Untreated sexually transmitted infections (STIs) can have an impact on how successful your HIV treatment is in controlling the virus in your system.

You will be offered a sexual health ‘screen’ (set of tests) within four weeks after your HIV diagnosis and after that at least once a year. Gay and bisexual men will also be recommended to test for syphilis (a blood test) every 3 to 6 months.¹ ICON-E

Your doctor might suggest that you have STI checks more often if they think that you may be at greater risk of getting a new infection. 

[1] BHIVA Standards of Care – Standard 7 - Sexual health and identification of contacts at risk of infection. http://www.bhiva.org/standards-of-care-2012.aspx

Women living with HIV who do not want to become pregnant should be prescribed whichever contraceptive method is suitable for their needs.¹ ICON-E  As well as male and female condoms, this may include the hormonal contraceptive pill (The Pill), implants, injections IUDs (intrauterine device), IUS (intrauterine system) and vaginal ring. To learn more about different types of contraception, read this guide. 

Your GP will be able to prescribe at least some of these methods but not all surgeries offer all options. You can also ask for contraception from community contraception clinics and some sexual health clinics . But as some HIV medication can interact badly with hormonal contraception, it is best to talk to your HIV doctor about what the best option is for you and make sure whoever prescribes your contraception is aware of all the medication you are on.

[1] BHIVA/BASHH/FRSH Guidelines for the management of the sexual and reproductive health of people living with HIV infection 2008 http://www.bhiva.org/UKGuidelines2008.aspx

Mother-to-child-transmission of HIV remains a concern for many people living with HIV who are thinking about having children.  But in the UK you can get medical help to prevent this and less than 0.5% of babies born to HIV positive mothers who get this help will have HIV.¹

If you are in a relationship where only one partner is living with HIV, it is possible to conceive a baby without the HIV negative partner getting HIV.  But the options are different depending on whether the mother or father is living with HIV.  Some methods are easy to do yourself at home but for others you need assistance from a fertility clinic ('assisted conception services').² ICON-E Your HIV doctor can give you information on this. Some hospitals also have specialist clinics for people living with HIV who are trying to have a baby.

Your HIV clinic should give you advice and support with whatever reproductive choices you want to make.³ ICON-E This includes contraception (if you don’t want to get pregnant – see also As a woman living with HIV, can I get the contraceptive pill from my GP?) and any plans to have children.  Even if you don’t have any immediate plans to have a family, you can have a general conversation with your HIV doctor or nurse about getting pregnant and having a baby while living with HIV.

In addition to the information in the sections below, NAM have developed a practical tool to provide you with personalised information if you are:

• a woman living with HIV who is pregnant
• a woman living with HIV who wishes to become pregnant
• a woman who is HIV negative and wishes to have a baby with an HIV positive male partner.

Positively UK also has resources and practical help for women living with HIV who are pregnant and couples affected by HIV who wish to have a baby.

[1] Townsend et al. Earlier initiation of ART and further decline in mother-to-child HIV transmission rates, 2000-2011. AIDS 2014,28:1049–1057
[2]NICE Fertility Guidance 2013 http://guidance.nice.org.uk/CG156 BHIVA Guidelines for the management of HIV infection in pregnant women 2012. http://www.bhiva.org/PregnantWomen2012.aspx 
[3] BHIVA Standards of Care – Standard 8 – Reproductive health. http://www.bhiva.org/standards-of-care-2012.aspx

People living with HIV are more likely to experience problems with getting pregnant than the general population. 

Also, if you are in a relationship where one partner is HIV negative and the other HIV positive, you might need to use assisted conception methods (from a fertility clinic) to prevent HIV transmission. Men who are HIV positive and want to have a child might be recommended to use ‘sperm-washing’ services to prevent HIV transmission (however, this may not be necessary if the man is on effective treatment).¹

Your HIV clinic should have plans in place to refer you to any fertility or assisted conception services you need.²  ICON-E These services might be different depending on where in England you are living.  In some areas you might be able to get all your services paid by the NHS, but in many cases you will be asked to pay for some or all of your treatment. If you are being asked to pay, talk to your HIV clinic or HIV support organisation. They may be able to help you ask the local NHS for the funding you need.

[1] NICE Fertility Guidance 2013. http://www.nice.org.uk/CG156 
[2] BHIVA Standards of Care – Standard 8 – Reproductive health. http://www.bhiva.org/standards-of-care-2012.aspx; NICE Fertility Guidance 2013 http://www.nice.org.uk/CG156

Many women living with HIV are diagnosed during routine antenatal screening. If this happens you would have been referred to an HIV doctor to support you during your pregnancy. If you were diagnosed before pregnancy and already have an HIV doctor, you may have already told them about your plans to have a baby. If not, it is good to tell them as soon as possible when you find out you are pregnant. This is so they can plan the treatment and care you will need to prevent your baby from contracting HIV. With the right treatment and care, there is a less than 1% chance that your baby will contract HIV.

During your pregnancy, you will be under the care of an expert team including¹ ICON-E :

• an HIV doctor
• an obstetrician
• a specialist midwife
• a paediatrician.
  
  

The most important tool in making sure your baby remains HIV negative will be the HIV medication that your doctor prescribes for your pregnancy (your baby will also get some medication after s/he is born).  It is increasingly common for HIV positive women to be recommended to have a vaginal (‘natural’) birth as the best option for mother and baby.  However, your doctor may still recommend a planned caesarean section as a precaution against transmission of HIV to your baby. If you have any worries about the HIV medication or the type of birth your doctor has recommended, ask for more information.  You can also talk to your HIV nurse or someone at your local HIV organisation if you are worried about how your pregnancy is being managed. ICON-A

[1] BHIVA Standards of Care – Standard 8 – Reproductive health. http://www.bhiva.org/standards-of-care-2012.aspx HIVA. 2013. Standards of care for people living with HIV

Some people living with HIV have had the experience of dentists taking extra measures to protect against HIV transmission. This includes restricting how and when patients with HIV can access services – for example, only on the last appointment of the day, to allow for extra cleaning afterwards. Others have been told they would have to pay above the usual NHS rates for dental services. But such measures are not necessary and are discriminatory.¹ ICON-R Dentists should use ‘universal precautions’ to prevent infection for all patients, regardless of whether they are known to have HIV.  

[1] Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents

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

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. ICON-R  Another option is to do a self-assessment, where you take the lead in identifying your needs and goals. ICON-R

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. ICON-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.

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

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. ICON-R

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. ICON-E 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

[1] CARE ACT 2014 - fact sheet 8 https://www.gov.uk/government/publications/care-act-2014-part-1-factsheets/care-act-factsheets--2

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 ICON-R  The local authority must also consider the wider needs of your family and household who may be supporting you at the moment. ICON-R
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. ICON-E

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. ICON-R

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. ICON-R

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.

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

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 ICON-R

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

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. ICON-A 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).

After you are diagnosed with HIV, you will be offered support with telling your current and previous partners about your HIV status.¹ ICON-E  This is called 'partner notification' or sometimes 'contact tracing'.  This can be done in a number of ways. Your HIV clinic can work with you until you feel ready and able to tell your partner/s that you are HIV positive. They can contact your partner/s on your behalf (anonymously if you want) with your permission. Or you might come to an agreement with your clinic that if you haven't been able to tell your partner/s by a certain date, they will do it for you (again, this can be anonymous).

Partner notification is not only for newly diagnosed people. You can also get support at any time with telling any new partners you have that you are living with HIV.¹ ICON-E

HIV support organisations are also able to provide emotional support and practical guidance on how to talk to partners about HIV. You can find local HIV services by asking at your HIV clinic or searching online:

• http://www.aidsmap.com/e-atlas

The MyHIV website is another source of support. It includes a confidential forum where you can talk to other people living with HIV about the issues and concerns you have, including telling partners about your HIV.

[1] BHIVA Standards of Care – Standard 7 - Sexual health and identification of contacts at riskof infection. http://www.bhiva.org/standards-of-care-2012.aspx

It’s a good idea to tell your GP about your HIV diagnosis. ICON-A HIV is a long-term condition and GPs can help you manage your health. It is also important that GPs know what medication you are on so that they don’t prescribe anything that interacts with it. ICON-A

However, you do not have to tell your GP. You also don’t have to tell them immediately after diagnosis – you can wait until later. You can also register with a new GP if you don't feel comfortable disclosing to your current one. (For more information see My GP).

If you have not yet told your GP about your HIV, remember that your HIV status will normally be included in any referrals that your HIV clinic might make on your behalf, for example to a hospital specialist. A copy of these referral letters are normally also sent to your GP, so if you do not want your HIV status disclosed you should make sure your HIV clinic is aware of this.

GPs normally assume that there is implied patient consent to share relevant medical information with other parts of the NHS, when referring you for other care (e.g. hospital services). 

HIV is considered relevant to almost all aspects of your care, so this information would routinely be shared with other parts of the NHS to help ensure your healthcare is safe and of a high standard. This is especially important if you could be prescribed drugs which would interact badly with any HIV medication you are taking

You have a right to receive a copy of any letter your GP sends about you to another part of the NHS.¹ ICON-R

However, if you do not want your GP to share your HIV status with another part of the NHS, you can ask them not to.  It is important to have this conversation, so that your GP knows that you don’t consent to have your information shared.

As your HIV status will normally be recorded somewhere on your patient record, reception staff may sometimes see this. However, only those who need to know will access this information and only on a need to know basis.

All NHS workers are bound by a duty of confidence, not just clinical staff. Receptionists and other administrative staff are contractually obliged to show regard to the NHS Code of Practice on Confidentiality and could face dismissal if they were to breach the confidentiality of a patient. ICON-R

[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

The personal information you provide to the local authority to apply for support services will be treated confidentially. This information will only be shared with people who need to know it in order to provide you with services.¹ ICON-R

Some types of personal information are considered ‘sensitive’ under the law. This includes information about your physical or mental health, sexual life, ethnic origins, political views and any criminal offences.² ICON-R  Before your local authority uses any of this information, they will need to ask your permission. They cannot assume that you give consent to use it.

Make sure you let the local authority know if there are people involved in your care who you don’t want to know about your HIV status. For example, if you have a support worker helping you in the home and you’d rather not have them know your status, say this to the local authority.

[1] English Common Law; Data Protection Act http://www.legislation.gov.uk/ukpga/1998/29/contents 
[2] Data Protection Act 1998 http://www.legislation.gov.uk/ukpga/1998/29/contents

Your GP is not to tell anyone outside of the NHS about your HIV status without your consent.¹ ICON-R  This includes your employer, your children and insurance companies and the Department for Work and Pensions (for disability benefits claims). 

For insurance requests the insurance company should send the GP a consent form which you have signed.  For employer requests the GP should talk to you to make sure you understand what is involved in the disclosure and have consented to this, before they share the information.

If you do consent to have information shared the GP should only provide information that is relevant to the request.  Only rarely will it be necessary to send your full patient record (this is the case for certain benefits requests and for some solicitors' requests).   If  you have any concerns about what information your GP is sharing for any request, ask them about how much detail they are providing, and whether this is necessary. ICON-A You have a right to see a copy of the information that is shared.¹ ICON-R

[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

If you are unhappy with the care being provided to you by your HIV doctor you have a right to ask to be seen by another doctor. You can also move to another clinic.  But you should first raise your concerns and see whether they can be sorted out.

Your clinic may also have a patient representative living with HIV who can give you advice and help you decide what to do about your complaint. You can also get help and advice from:

• PALS (the patient advisory and liaison service) -  PALS’ role is to help patients raise their concerns with NHS providers. You can search online for your local PALS. Your clinic should also be able to signpost you to your local PALS
• NHS Complaints Advocacy Services – Each local authority has a duty to commission independent complaints advocacy services to support people who wish to make a complaint.  Your local authority will be able to tell you who provides these services in your area.  The three main providers are POhWER, SEAP and VoiceAbility
• THT Direct – the Terrence Higgins Trust run a free confidential helpline for emotional support, information and advice on HIV, including problems you may have with your clinic 0808 802 1221
• MyHIV – A website from the Terrence Higgins Trust to support people living with HIV as a long term condition. As well as information and resources, MyHIV includes a confidential forum where people living with HIV can support each other and share experiences and advice. http://www.myhiv.org.uk/

You have a right to have input into how your HIV clinic services are planned and provided. The clinic should explain to you the basics of how the clinic services are run and how you can get involved and you should be able to see agendas and minutes of planning meetings.¹ ICON-E

[1] BHIVA Standards – Standard 10 – Participation of people living with HIV in their care. http://www.bhiva.org/standards-of-care-2012.aspx

You have the right to complain about any aspect of your experience in your GP practice or dentist, and to learn the outcome of your complaint.¹ ICON-R

Your first step is to complain directly using the complaints procedure at the practice.  Most will have a written complaints procedure, or you may speak to the practice manager. If the practice does not resolve your complaint satisfactorily, you may go to your local independent complaints advocacy service (ICAS) - your local council should provide details. If you still cannot resolve the issue, you can complain to the Parliamentary and Health Service Ombudsman.

Healthwatch provides advice on how to make a complaint about any health or care service through their online complaints tool.

You can also get advice from:

• PALS (the patient advisory and liaison service) -  PALS’ role is to help patients raise their concerns with NHS providers.  You can search online for your local PALS. Your clinic should also be able to signpost you to your local PALS
• NHS Complaints Advocacy Services – Each local authority has a duty to commission independent complaints advocacy services to support people who wish to make a complaint.  Your local authority will be able to tell you who provides these services in your area.  The three main providers are POhWER, SEAP and VoiceAbility
• THT Direct – the Terrence Higgins Trust run a free confidential helpline for emotional support, information and advice on HIV, including problems you may have with your GP or dentist.  0808 802 1221
• MyHIV – A website from the Terrence Higgins Trust to support people living with HIV as a long term condition.  As well as information and resources, MyHIV includes a confidential forum where people living with HIV can support each other and share experiences and advice. http://www.myhiv.org.uk/

[1] Handbook to NHS Constitution, March 2013. http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx

You have the right to make a complaint about any aspects of the social care you are getting. This might include situations where you think you have been discriminated against because of your HIV, nationality, sexuality or gender, or if you think your right to confidentiality has not been respected.¹ ICON-R  It can also include any complaints you have about the amount of funding you have been given in your direct payment, if you have not been able to resolve this through discussions with your local authority.² ICON-R

The complaint should be made using the local authority social services complaints procedure. If you are complaining about the quality of the service you got, you should firstly complain directly with the service provider or practitioner. You may be able to work with an independent conciliation and mediation service to resolve the issue. If the complaint remains unresolved, you can refer it to the Local Government Ombudsman.² ICON-R  In cases where you are still unhappy with the outcome, judicial review may be an option.

Healthwatch provides advice on how to make a complaint about any health or care service through their online complaints tool.

[1] Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents; Data Protection Act 1998
[2] Local Government Ombudsman http://www.lgo.org.uk/

One new decision-making body in the new system is the Clinical Commissioning Group (CCG). CCGs are groups of local GPs. They are in charge of commissioning secondary care services for your area – secondary care is healthcare that you normally get from a hospital. There is at least one CCG in every local authority. ICON-R  NHS England have provided a map of all CCGs in England. 

A national body called NHS England commissions services for health conditions which are too rare and specialised to be managed by local CCGs. This includes HIV treatment and care. NHS England also commissions GP, dentist and pharmacist services (called primary care).

Local authorities (councils) commission social care services in their area – these are support services to help people live independent and fulfilling lives (see section on Social Support). 

Local authorities also commission public health services for their communities.  Public health is about making sure communities are supported to stay healthy and avoid illness. This can include things like vaccinations, health promotion campaigns (e.g. on stopping smoking or healthy eating) and sexual health services (including clinics and prevention campaigns). So your local authority must provide sexual health (GUM) clinics (except for HIV treatment) and HIV prevention services.¹ ICON-R

[1], Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) Regulations 2013 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/216712/dh_131901.pdf

Each local authority has a Health and Wellbeing Board ICON-R who can be contacted. This is a forum where the decision makers – local authorities, CCGs and local representatives of NHS England – come together to make plans for your local services.
Each year the Health and Wellbeing Board sets outs the priorities for services in the local area through two key documents:  the Joint Strategic Needs Assessment (JSNA) and the Joint Health and Wellbeing Strategy (JHWS).¹ ICON-R (For more information see What are JSNAs and JHWSs and why do they matter?)

The Health and Wellbeing Board also signs off all commissioning plans made by the Local Authority and CCGs, having checked that these reflect the priorities outlined in the JHWS.

The Health and Wellbeing Board’s job is to make sure that these plans for health and social care work well together to meet the needs of local communities. Health and Wellbeing Boards should also make the commissioning process clear and responsive to local communities.² ICON-R

[1] Statutory Guidance on Joint Strategic Needs assessments and Joint Health and Wellbeing Strategies. http://www.networks.nhs.uk/news/statutory-guidance-on-joint-strategic-needs-assessments-and-joint-health-and-wellbeing-strategies

2] Department of Health guide to Health and Wellbeing Boards http://healthandcare.dh.gov.uk/hwb-guide/

NHS England publishes a national HIV Service Specification. This tells your HIV clinic what services it must provide.

Even though NHS England is a national organisation, it operates through 4 regions (North of England, Midlands and East, London and South of England. There are also 10 commissioning hubs,with the job of commissioning HIV treatment and care (as well as care for other specialised conditions). So they will commission the HIV care not just in their own local area but also in some of the neighbouring areas.¹ ICON-E

When commissioning HIV treatment and care, HIV England also takes advice from a Clinical Reference Group (CRG) on HIV. This group is mostly made up of HIV doctors, who represent each of the Clinical Senate regions. There are also patient and carer representatives.  You can see the membership of the HIV CRG on their website.

[1] Set out in appendix 2 of this document: https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2015/03/spec-serv-collabrtv-comms-guid.pdf

Every local authority with a Health and Wellbeing Board must also have an Overview and Scrutiny Committee.  This is a committee of local councillors who have the job of scrutinising how NHS services and social care are commissioned and provided.

You can find out more about your local Overview and Scrutiny Committee on your local council website.  There will be information on their meetings, work programme and how you can get your voice heard.  You can suggest topics that the Committee should look at. 

The Overview and Scrutiny Committee can require NHS and social care commissioners to attend its meeting and explain their decisions on a particular issue.  After looking at an issue, the Committee will make recommendations.  These recommendations are not mandatory but they must be considered and responded to by the decision-makers responsible.

The Overview and Scrutiny Committee has a lot of influence so they are worth approaching if you want to see improvements in your health and social care services.

All decisions that commissioners make - for health, public health and social care – must take into account the Joint Strategic Needs Assessment (JSNA) and Joint Health and Wellbeing Strategy (JHWS) prepared by the local Health and Wellbeing Board (HWB).  This should mean that services reflect the needs and priorities of the local community, which were identified through research and consultation with local people.¹ ICON-R

The JSNA is a process of looking at the characteristics of the local community and what health, social care and public health needs exist in the area. The JHWS sets out which of these needs are to be prioritised when funding services. ICON-R

[1] Statutory Guidance on Joint Strategic Needs assessments and Joint Health and Wellbeing Strategies.  http://www.networks.nhs.uk/news/statutory-guidance-on-joint-strategic-needs-assessments-and-joint-health-and-wellbeing-strategies 

Decision makers must report to their communities how well they are achieving a range of specific ‘outcomes’ for the health of their population. These are outlined in a set of Outcomes Frameworks which cover NHS, public health and social care services. The set of outcomes and the way of measuring progress against them is the same across all areas, so it is possible to compare how different local areas are doing.

For example, one of the indicators of how well a local area is doing at health protection is the proportion of people diagnosed with HIV who are diagnosed ‘late’ (after they should have started treatment). Your local area should be trying to reduce the proportion of people diagnosed late.¹ ICON-R

There are other, broader outcomes which health services are supposed to achieve that are relevant to people living with HIV. These are called the ‘domains’ of the NHS Outcomes Framework and sum up how good healthcare is defined by the NHS:

• preventing people from dying prematurely
• enhancing quality of life for people with long term conditions
• helping people to recover from episodes of ill health or following injury
• ensuring people have a positive experience of care
• treating and caring for people in a safe environment; and protecting them from avoidable harm.²  ICON-R

Appendix 2 of the BHIVA Standards of Care3 links back to these domains of the NHS Outcomes Framework, showing how specific aspects of good quality HIV treatment and care can contribute to achieving these outcomes. So you can refer to the NHS Outcomes Framework when arguing for the high quality HIV care set out in the BHIVA Standards.

[1] Public Health Outcomes Framework - http://www.phoutcomes.info/ 
[2] NHS Outcomes Framework http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_122944
[3] BHIVA Standards of Care - Appendix 2 http://www.bhiva.org/ClinicalGuidelines.aspx

NHS England (who commission HIV treatment as well as primary care services) and Clinical Commissioning Groups (who commission secondary care services) have a duty to reduce health inequalities.¹ ICON-R

‘Health inequalities’ is a way of describing the way that some groups and communities have poorer health than others.  The duty to reduce these inequalities requires decision-makers to address both barriers to accessing services and differences in how certain groups benefit from these services. ICON-A

Local authorities should also be working to reduce health inequalities in their community as part of their public health duties.  This could include thinking about the needs of groups most affected by HIV – such as gay men and African-born women and men - with prevention, testing, social support and other relevant services.

[1] Health and Social Care Act 2012 http://www.legislation.gov.uk/ukpga/2012/7/contents/enacted

The new NHS system includes a range of ways to get involved.  Some of these are new but others already exist or have been made stronger in the new system:

• health and wellbeing boards (new)
• Healthwatch (new)
• NHS England - via area teams and clinical reference groups (new)
• local councillors - (individually and via the Overview and Scrutiny Committee)
• clinic patient and public engagement (PPE) groups.

The sections below tell you more about how to have your voice heard by these decision-makers.

There is a list of groups and people who must be represented on the Health and Wellbeing Board. These are¹ ICON-R:

• (at least) one local councillor
• local Healthwatch
• each local clinical commissioning group (CCG)
• the director for adult social services
• the director for children’s services
• the director of public health.

A representative of NHS England will also participate in the key activities of the Health and Wellbeing Board – assessing the needs and priorities of the local area. They will also attend Health and Wellbeing Board meetings to discuss the areas of local healthcare provision which NHS England is responsible for – including your HIV services.¹ ICON-R

However, a local area may choose to invite others to join their Health and Wellbeing Board, for example, representatives of the local voluntary sector or community groups.

Membership is not the only way to get involved with the work of Health and Wellbeing Boards. All boards are expected to actively consult with local people and make sure that the needs of the whole community are represented in their plans.² ICON-R

In addition, meetings of the Health and Wellbeing Board are held in public, so anyone can go and listen to the proceedings.³ ICON-R

[1] Health and Social Care Act 2012 http://www.legislation.gov.uk/ukpga/2012/7/contents/enacted 
[2] Statutory Guidance on Joint Strategic Needs assessments and Joint Health and Wellbeing Strategies. http://www.networks.nhs.uk/news/statutory-guidance-on-joint-strategic-needs-assessments-and-joint-health-and-wellbeing-strategies
[3] A map of all Health and Wellbeing Boards with contact details is available from the Local Government Association: http://www.local.gov.uk/web/guest/health/-/journal_content/56/10171/3510973/ARTICLE-TEMPLATE

There is a new organisation called Healthwatch which represents patients and the local community in decision-making about health and social care in the local area.

There is a local Healthwatch in every local authority. These new bodies have replaced the Local Involvement Networks (LINks). ICON-R  Local Healthwatch provides information about health and social care services available in your community, and listens to your views on these services.

Local Healthwatch also has a seat on every Health and Wellbeing Board to represent patients, carers and other service users. It has a responsibility to gather and reflect the needs and views of all service users in the community.

Local Healthwatch can raise concerns about specific healthcare providers with Healthwatch England - the national body which leads and supports the Healthwatch network. Healthwatch England can, by law, take significant matters of concern further, for example calling on the Care Quality Commission to investigate.

Anyone can get involved with their local Healthwatch. Healthwatch should make an effort in your local area to connect with service users, existing patient groups and communities.¹ ICON-R

[1] Department of Health/LGA - Local Healthwatch Regulations Explained-http://www.local.gov.uk/c/document_library/get_file?uuid=63371855-2af6-4c97-a9da-fbcc37f1d44e&groupId=10171

All public sector service providers, including those providing HIV and other health and social support services, are bound by the Public Sector Equality Duty (PSED). Under the PSED, the NHS, local authorities and anyone else involved with providing services must ‘have due regard’ (that is, consider and take seriously) the need to:

• eliminate discrimination, harassment and victimisation on the basis of someone’s disability (including HIV) or their age, race, sex, sexual orientation, gender re-assignment, pregnancy and/or maternity, marriage or civil partnership, religion or belief
• advance equality of opportunity (reducing any disadvantages faced by specific groups, taking steps to meet a diverse range of need, and encouraging all sections of the community to get involved with planning services)
• foster good relations, tackle prejudice and promote understanding.¹ ICON-R

So if you think, for example, people with HIV are not being treated equally and fairly and respectfully by some part of the NHS, or if you think people with HIV are not being given the support they need to enter employment, you can raise this with local decision-makers and refer to the Duty as a way to encourage them to take action.

[1] Equality Act  2010 http://www.legislation.gov.uk/ukpga/2010/15/contents

You have a right to have your say on what services should be provided in your local area for people living with HIV (and on any other health or social care services).

Your HIV clinic should give you opportunities to be involved in decisions about the services they provide.¹ ICON-E This can be done in formal and informal ways.  You should be supported to participate and given enough time to have your say before decisions are made.¹ ICON-E

You can also influence the decisions that commissioners make about all health and social care services in your area. As an individual, you can do any of the following:

• ask your local councillor if HIV is a public health priority in your area and what prevention work is being done
• tell your local councillor why HIV-specific social care services should be provided in your area, including those provided by voluntary sector organisations which anyone in need can access
• join your local Healthwatch or ask how they will represent the needs of people living with HIV
• attend a meeting of your Health and Wellbeing Board and ask a question about your HIV services
• find out what the JSNA and JHWS for your local area say about HIV and participate in the consultation for next year’s needs assessment
• contact your local Overview and Scrutiny Committee and suggest they look into a specific issue which is relevant to improving HIV services.

These are just suggestions – you can ask commissioners and local councillors anything that is important to you as someone who uses HIV services.

You can also shape services with the help of a local HIV support organisation or other local group (see How can my clinic or local HIV support organisation influence services?).

[1] BHIVA Standards – Standard 10 – Participation of people living with HIV in their care. http://www.bhiva.org/standards-of-care-2012.aspx

Local HIV clinics, support organisations and other voluntary sector groups can also represent the needs of people living with HIV, for example by:

• meeting with the NHS England Area Team responsible for HIV clinic services in your area
• getting in touch with a local HIV doctor or patient representative who sits on the HIV Clinical Reference Group, who advise NHS England about what HIV clinic services to provide
• speaking to local councillors about how HIV is going to be considered in plans for health, public health and social care
• meeting with the local Clinical Commissioning Group to ask how they are considering the needs of people living with HIV when planning hospital services
• participating in the JSNA and providing comments on the JWHS
• seeking a place on the local Health and Wellbeing Board and/or attending meetings
• making links with the local Healthwatch to make sure that the needs of people living with HIV are understood and represented
• contacting the Clinical Senate for your area and ask them to consider specific issues relating to your HIV services
• working with local providers of services to make sure that these are HIV aware and sensitive of issues such as confidentiality.

HIV organisations can also support people living with HIV who want to make their own voice heard to get involved.