MY CARE MY VOICE

A GUIDE FOR PEOPLE LIVING WITH HIV IN ENGLAND

Here you will find our guides for people living with HIV, with information your rights and what you should expect from your health and support services. There is also advice on how to get the most from your HIV services, and how to shape the way services are provided for yourself and others living with HIV.


KEY


A right you have as a user of a service
An expectation you should have as a user of a service,
based on best practice and professional standards
This is advice on how to get the most out of your services

My HIV Clinic

HIV clinics are ‘open access’. ICON-R This means:

  • you can move clinics at any point in your treatment
  • you can go to any clinic you want, even if it is outside the area you live in
  • you can go straight to the clinic you choose without being referred by a GP

If you do move though, you should let your old clinic know so that they can pass on your medical notes.

You can find a clinic by searching the NHS website

my gp


other doctors i see

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

my medication

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

mental and emotional health

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​​​​​​​

sexual and reproductive health

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

dentists

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​​​​​​​

social support

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. 

confidentiality and disclosure

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​​​​​​​

DISCRIMINATION AND COMPLAINTS

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/

WHO DECIDES WHAT HIV SERVICES YOU WILL GET

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​​​​​​​

HOW YOU CAN IMPROVE YOUR HIV SERVICES

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.