My Care My Voice

The place where you were tested for HIV must have a plan in place to guide you into specialist HIV care.¹ ICON-E

You should receive a full assessment by an HIV doctor within 2 weeks of your HIV diagnosis.  If you were diagnosed with HIV symptoms or an HIV-related illness you should be seen by an HIV doctor within 24 hours.¹ ICON-E

Within 2 weeks of your initial assessment (so within 1 month of your diagnosis) you should have¹ ICON-E:

• been told your CD4 count (this is a measure of the strength of your immune system – the higher the CD4 count, the better)
• had all the tests and checks which are recommended by clinical guidelines
• talked to your doctor about the management and treatment of HIV
• been told how and where you can get psychological and emotional support and other support services for people who have been diagnosed with HIV

[1] BHIVA Standards of Care- Standard 2- Access to, and retention in, HIV treatment and care. http://www.bhiva.org/standards-of-care-2012.aspx

The way to find an HIV doctor is the same for everyone, even if you are not a permanent resident or citizen.

Anyone living in England can see an HIV doctor for free, whatever your nationality or immigration status.¹ ICON-R  You will also be given your HIV medication for free as well as any treatment you need for other sexually transmitted infections (STIs), Hepatitis or TB.² ICON-R

Some migrants may have to pay for their other hospital services, however, such as cancer and maternity care.² ICON-R 

[1] The National Health Service (Charges to Overseas Visitors) Regulations 2012. http://www.legislation.gov.uk/uksi/2011/1556/made
[2] The National Health Service (Charges to Overseas Visitors) Regulations 2011. http://www.legislation.gov.uk/uksi/2011/1556/made

Inside your HIV clinic you should find: 

• consulting rooms where you can talk to doctors and nurses in private
• waiting areas
• areas to take blood and do any other necessary tests.
  
  

You might also find:

• a pharmacy
• areas for counselling and advice on taking your treatment and living with HIV

If these services are not inside your clinic, they should be in the same building or nearby so that you can easily visit them on the same day as your clinic appointment.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

Your HIV clinic will follow national guidelines for HIV treatment and care which are developed by the British HIV Association (BHIVA) the professional organisation for HIV doctors.¹ ICON-E

You will have between 2 and 4 appointments a year with your HIV doctor (every 3-6 months).  At these visits you may have tests including² ICON-E:

• checking your CD4 count (a measure of the impact of HIV on your immune system – the higher your CD4 count the better)
• measuring your viral load (a measure of how much HIV is detectable in your blood – the lower the viral load the better)

Your HIV doctor will also prescribe medication which is designed to lower your viral load to tiny amounts, fighting the impact of HIV on your immune system.  As a result your CD4 count will increase.

Your doctor will talk to you about how you are feeling physically, including any side effects of treatment or other symptoms you are experiencing, and how you are managing with taking your medication (if you have started treatment).³ ICON-E

Your doctor should also ask how you are feeling emotionally and psychologically and tell you where you can get support for any problems you are having.³ ICON-E

[1] BHIVA clinical guidelines. http://www.bhiva.org/ClinicalGuidelines.aspx
[2] BHIVA Guidelines for the Routine Investigation and Monitoring of HIV-1-infected Individuals. http://www.bhiva.org/monitoring-guidelines.aspx 
[3] 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​​​​​​​

HIV is a complex condition which can affect your physical and mental health in lots of different ways.  Medical studies have found that people living with HIV are more likely to experience other health problems which are not directly HIV-related, but have an impact on your overall well being.

For this reason your HIV doctor will send you for extra tests to check if any of the following might affect you:

• sexually transmitted infections
• heart disease risk
• kidney problems
• smoking history
• hepatitis A, B and C
• TB

 You will also be tested to find out if there are any HIV drugs which will not work for you.  This is called ‘HIV drug resistance’ and can be transmitted with the virus.

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 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 ​​​​​​​

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

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​​​​​​​

Dentists often ask new patients whether they have HIV. You don’t need to respond to this question if you don’t want to. However, there are benefits to telling your dentist. People with HIV are more likely to have particular dental problems, particularly at low CD4 counts. Your dentist may also prescribe medication such as sedatives (for people with dental phobia) which could interact badly with your HIV medication. ICON-A

If you do tell your dentist your HIV status, they must keep this confidential.¹ ICON-R

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

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. ICON-A

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 NHS website.

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 

You have the right to privacy and confidentiality and to expect the NHS to keep your personal information safe and secure.¹  ICON-R

You also have a right to see what information is recorded about you on your patient records and what parts of your record are shared with other healthcare professionals.¹ ICON-R

[1] NHS Constitution http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Overview.aspx ​​​​​​​

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:

• www.nhs.uk/service-search

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. 

Looped In is created and run by National AIDS Trust. It allows users to create custom webpages that can be shared with others to support conversations about 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

You have a right not to be unlawfully discriminated against in accessing any healthcare or social care services. Discrimination is unlawful on the basis of gender, race, religion or belief, sexual orientation, disability or age.¹ ICON-R

HIV is legally defined as a disability from the moment you are diagnosed.  You do not have to think of yourself as disabled to be protected by this law (the Equality Act 2010). From the point of view of the law, you have a disability and so any HIV discrimination against you is unlawful.¹ ICON-R

Discrimination in healthcare might involve:

• a doctor, nurse or dentist refusing to treat you because you have HIV
• having to wait longer to be treated because you have HIV (for example, being told you must take the last appointment of the day)
• or any situation where you get worse treatment than other patients because of your HIV.

Discrimination in social care might involve:

• refusal to provide a service because you have HIV
• a poorer quality service because you have HIV (e.g. taking unnecessary additional precautions against HIV transmission when providing personal care services).

You are also legally protected against harassment. This is behaviour by healthcare or social care staff which violates your dignity or creates an intimidating, hostile, degrading, humiliating or offensive environment.¹ ICON-R

The Equality Act also protects you from further discrimination if you choose to make a complaint (this is an example of ‘victimisation’).¹ ICON-R

• EASS (Equality Advice Support Service) – Provides information and advice to individuals on discrimination and human rights issues including your rights under the Equality Act. 0808 800 0082
• THT Direct – the Terrence Higgins Trust run a free confidential helpline for emotional support, information and advice on HIV, including problems you are having getting the social support you need 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] Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents

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​​​​​​​

When talking about health and social care services, commissioning describes the process of: 

• identifying the needs of a population
• planning how to meet these needs through appropriate services
• deciding who will provide the services, and
• paying for the services.

The recent changes to the NHS are changes to commissioning - in particular, who is now responsible for commissioning services.  This means that there are new processes for making decisions and new bodies and forums where these decisions are made.

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​​​​​​​