This page highlights important information about your treatment here at the Stonegrove Centre. Please click the below drop down menus for the information you require.

If you just found out that you're HIV positive, don't worry - we're here to help with information, advice and support.

Click the link below for some helpful information or call our team of specialist nurses if you have any questions.

I just got diagnosed with HIV. What do I need to know?

People living with HIV now live into old age

Looking after your long-term physical, psychological and social health involves regular monitoring by HIV clinicians through an effective and efficient annual review process. Annual health reviews for people living with HIV are recommended by the British HIV Association for the prevention and early detection of changes to health.

For further information please contact Simone Naylor Clinical Nurse Specialist on 0114 2711882 or via email at sth.specialistnursingteam@nhs.net

Recieving a positive diagnosis

Being told you are HIV+ can cause any variety of emotional responses including shock, anger, fear, distress, shame or feeling emotionally numb. There is no ‘right’ or ‘wrong’ way to react or an expected time limit for these feelings to change. It is important that you take the time you need to explore your feelings and work things out.

There is lots of help and support available. At the time of testing you will be offered the opportunity to talk about your feelings about the diagnosis and to ask as many questions as you might have about how your life will be affected. Don’t worry if you forget to ask anything, or can’t take everything in – this is to be expected. You can always ask again at another time or be guided to written/ online information.

There are a range of different services available to support you in managing your positive diagnosis, whether around treatment options, daily living or finding peer support networks.

Adjusting to diagnosis and treatment

Adjusting to a positive diagnosis can be very challenging, where emotional distress and feelings such as anger, guilt, fear, or shame can make it very difficult to think positively about the future, and to think about the options available for moving forward. For most people these feelings about having HIV change over time and people gradually come to terms with living with HIV. However some aspects of living with HIV can still cause difficult feelings and some people may experience ongoing difficulties with low mood, depression and/or anxiety.

It’s important to be able to recognise these difficult feelings and know that you have a right to feel this way. By acknowledging these feelings you can then begin the process of seeking help and support to overcome these difficulties.

Mental and emotional wellbeing

Anyone can be affected by emotional difficulties, or suffer from mental health issues at any point in their lives – recent research has suggested that one in every four people in the UK will experience some sort of mental health problem at some point in their lives so it really isn’t uncommon. However, living with long-term conditions like HIV can mean that there is a greater likelihood you would encounter these problems for a host of different reasons.

Living with HIV can affect people in different ways. At times people can feel that they are coping and managing well. At other times people may feel anxious, stressed or depressed due to the way that HIV affects their lives. It is really important to look after your mental and emotional health and wellbeing as both have a significant impact on your ability to not only adhere and respond to your treatment regimes, but to also manage and get the most from your day-to-day lives.

With the advancements in HIV treatment, more and more people living with HIV are living longer, healthier lives, and adapting their lives and relationships to look after their emotional, physical and mental health and wellbeing.

Many elements may contribute towards living well with a HIV+ diagnosis including:

  • Accepting your own HIV status
  • Having choice around disclosure of HIV status
  • Positive relationships with partners, families etc
  • Goals for the future
  • Looking after your own physical health and wellbeing through healthy diets, rest and exercise
  • Access to care and support
  • Being in control of your own choices regarding alcohol, drug and tobacco use

Dealing with stigma

The prejudice and stigma that people have either directly experienced, or are concerned they may be subjected to, still presents major barriers to people living with HIV accessing the support, services and treatment that they need.

Experiences or perceptions of HIV related stigma can have major effects on an individual if left unmanaged including:

  • Increased anxiety and distress
  • Distrust of services around issues including confidentiality
  • Lower self-esteem and lack of confidence
  • Lessened health and wellbeing
  • Fear of criminalisation
  • Lower expectations for self and others
  • Feeling unable to disclose status to friends, families, work colleagues or partners

All of which have a significant impact, not only on a person’s ability to access the treatment and support required, but also their ability to adhere to their treatment and care regimes.

Stigma and discrimination can be very difficult to challenge or manage and it is really important that you remember that it is unacceptable and you do not deserve to be treated this way. If you then choose to challenge this treatment, you might want to consider the support, resources or information you might need to do this. A really useful resource you may wish to read when thinking about how you might be affected by HIV related stigma, and how you might wish to address it is the NAM resource ‘HIV & Stigma,’ available to download here.

Know your rights

The Equality Act 2010 gives protection to disabled people from discrimination in a number of different areas, including employment and recruitment. HIV is considered to be a disability for the purposes of the Equality Act from the time of diagnosis. While this identification may in itself appear stigmatising – it does provide protection of rights for people living with HIV in key aspects of all our lives (i.e. housing, benefits, employment, goods and services).

Support

When we are faced with any difficulty it can be made that much harder if we feel we have to manage it by ourselves. It is often helpful if we are able to talk through any difficult feelings whether this is with families, partners, friends or colleagues. It can also be beneficial to access specific support services such as the Forge Centre.

You may also find it useful to access peer support networks and HIV services which offer safe, confidential spaces to access one-to-one support and advice, time out from difficult situations, and the opportunity to share and learn from other people who have similar experiences or anxieties.

Telling friends and family

Deciding when (and if) to tell anyone you have HIV can be a really daunting prospect. The fear of rejection or negative reactions is often a real and understandable barrier in talking honestly and openly about your HIV status.

Psychologists, health advisers, specialist nurses and other HIV support workers can be helpful in talking through feelings about this, helping to formulate a plan for telling people your HIV status and dealing with any issues that arise afterwards.

HIV services in Sheffield can offer advice and support about speaking to others about your HIV status.

Contact:

The Health Adviser / Specialist Nursing Team at Sexual Health Sheffield on 0114 226 8888

Talking to other people who are also HIV positive may be useful. Sharing experiences, anxieties, concerns and solutions with other people in a similar situation can really help.

Please let the specialist nurses know if you would like to be referred to the HIV Peer Mentor Service.

Who needs to know?

The Health Adviser / Specialist Nursing Team at Sexual Health Sheffield on 0114 226 8888. Talking to other people who are also HIV positive may be useful. Sharing experiences, anxieties, concerns and solutions with other people in a similar situation can really help. Please let the specialist nurses know if you would like to be referred to the HIV Peer Mentor Service.

Although you don’t have to tell everyone (or anyone) that you are HIV positive, it is advisable to inform current, past and future sexual or injecting partners of the potential of infection. Research tells us that people who are HIV negative (or do not know their HIV status) often expect people to tell them they have HIV before having sex or sharing injecting equipment and that they generally assume that someone is HIV negative unless told otherwise. If you do not feel able to inform partners yourself, a specialist nurse or health adviser can help and even do this on your behalf without mentioning your name.

It is also advisable to share information about your HIV status with your GP and other health care workers. They can then offer you the best and most appropriate advice and treatment taking into account factors including immune system functioning and any HIV medication you may be taking.

If you are a health care worker, you are obliged to inform Occupational Health of your HIV status. They will not inform your manager or colleagues, but will ensure that you do not undertake exposure-prone procedures. HIV is covered by the Disability Discrimination Act, so your employer is obliged to make reasonable adjustments to your work if it is not appropriate for you to continue in your current work role.

Telling sexual partners

There is no legal obligation to tell your sexual partners that you have HIV.

In England and Wales people have been prosecuted for reckless transmission of HIV when they knew they had HIV, did not tell their partner, and went on to have unprotected sex, infecting them as a direct result of this.

In Scotland the law is largely the same, except that a case can also be brought if transmission hasn’t taken place but someone has been put at risk of transmission without their consent or knowledge.

There is robust research evidence to say that once you are on effective anti-retroviral treatment and have an undetectable HIV viral load, suppressed (below limit of detection) for at least 6 months, you won’t be able to pass on HIV. This supports the message of the international campaign U=U (Undetectable = Untransmittable).

An undetectable HIV viral load only prevents HIV transmission to sexual partners. Condoms also help prevent HIV transmission as well as other STIs and pregnancy. The choice of HIV prevention method may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners, they might consider using condoms to prevent other STIs.

Some of the benefits of telling sexual partners of your HIV status include:

It can help you to talk honestly and openly about making the sex you have safer and, therefore, reduce the risk of HIV transmission to others

It can then make you more relaxed and at ease about sex. If we are relaxed and at ease then we are more likely to enjoy sex more

Telling partners can mean not having to live with the stress of keeping HIV a secret. Even though it may be a difficult decision to make, ideally, you should discuss your status with sexual partners. This allows you and your partner to make decisions together about sex.

Talking these issues through with an HIV Specialist Nurse, or Health Adviser can be really helpful in planning for when and how to talk to your partners about your HIV status and also how to better negotiate sex that is safer for everyone involved.

Tips on telling others

Although people can’t plan for others reactions, having a disclosure plan and a good support system (this may be a key healthcare worker or close friend etc.) can be really helpful before, during and after disclosure.

When planning to disclose it can be useful to consider the following:

Think about and ask yourself why you want people to know. Do you want or need a specific kind of support from the person that you have decided to tell?

What agreement would you like to make about them telling other people? How will you feel if they tell others?

Plan what you are going to say, rehearse with a friend, a health-care worker or someone else who is HIV positive

You may want to bring information, leaflets, magazines, websites to show the person you are telling, or to leave for them to read

Make sure you do it in a safe place so that everyone is comfortable and in an environment where you can have an honest discussion

Let a friend or support worker know so that they can check that you are okay and give post disclosure support

Think about how disclosure will affect the person you are telling and think about the support they could also get from HIV healthcare professionals and how they might access this

Talk with other people who are HIV positive (maybe visit a local HIV peer support group) about different ways to disclose to others

Remember that there is absolutely no right or wrong way to do it. The methods of disclosure that you want to use are personal to you and should be what’s best for you. The really important thing is that you have control over who you tell, when you tell, how you tell and if you tell.

Whatever the reaction you get from disclosure to another person there is support available to help you plan and prepare for disclosure and to talk through how it went – whether you get a positive and supportive outcome or not quite the response that you had hoped for.

We can now organise for you to meet up with a peer mentor for support.  Peer Mentors are people living with HIV, who have completed a peer mentor training course. This enables them to support anyone experiencing problems relating to their HIV diagnosis. Anyone living with HIV can access the peer mentor service, irrespective of how long they have been diagnosed or what their difficulties are.

We currently have seven peer mentors who are able to support people within the hospital.  Peer mentors may get asked to see people who have recently found out they are living with HIV, to offer support, or perhaps an in-patient who would like to see a friendly face.  We hope to recruit more peer mentors, who are willing to commit to the peer mentor training and are able to offer some free time to support people during difficult times.

For further information please contact the specialist nurses on 0114 2711882 / 0114 27113531 or email sth.specialistnursingteam@nhs.net

The medicines used to treat HIV are called Anti-retroviral  medicines (ARVs). These are hospital only medicines, which means you will always get them from us. Your GP will not be able to prescribe these medicines for you, and you will not be able to take a prescription from the hospital to your local community pharmacist.

This means that it is important that your GP knows which anti-retroviral medicines you are taking, and that they check that any new medicines they prescribe for you do not cause problems with your HIV medicines.

What if I am running out of medication?

It is very important that you never run out of medication.

Ideally, you should always have around one month’s supply of medication at home when you attend clinic for your next appointment. If however you find you are running low and you will run out before your next appointment, please ring the specialist nurses immediately. If you have only a few days left, even if you normally have your medicines delivered by Homecare, there may not be enough time to arrange this and you may need to come to the hospital to collect a prescription from the hospital Boots pharmacy.

How can psychology help?

We work with people whose difficulties are related to their HIV status.

Types of difficulties that we can help with include:

  • adjusting to your diagnosis and treatment
  • feeling low in mood
  • worrying a lot of the time
  • concerns about how HIV is affecting your relationships
  • finding it difficult to take medication
  • concerns about your memory and concentration

These are just examples. You may have other concerns.

We use a range of talking therapies to help people understand their current difficulties and find ways to makes changes in their day to day lives. We can also carry out tests to assess difficulties or concerns about memory or concentration. We treat every person as an individual, so the type of support we offer will vary from person to person.

How can I arrange an appointment with a psychologist?

Any doctor or nurse within the HIV service can refer you to the psychology service. We will then contact you as soon as possible to offer you an appointment. If the gender of the psychologist is important to you then please let us know and we will do our best to accommodate you.

Where do appointments take place?

Appointments will normally be offered at the Stonegrove Centre

What happens at the first appointment and what then?

The aim of the first meeting is to gain an understanding of what your current concerns and difficulties are and to consider the impact that HIV is having on your life. As part of this we will ask you to complete some questionnaires about how you are feeling. We will decide together what kind of support would be most useful for you. It may be that another service would be more suitable for your needs. If so, we can help to arrange this for you. The first appointment can last up to an hour and a half.

If we decide together that the HIV Psychology service is the most appropriate one for you, you will be placed on the waiting list for therapy. We will contact you as soon as an appointment becomes available. Some people find that they feel better after one or two sessions. Other people find it helpful to meet regularly for a longer time. We will discuss this with you at the beginning of our work together and review how it is going on a regular basis.

 

We have a dedicated team of Social Workers who provide a range of support and services for people affected by HIV and/or Hepatitis.

How can we help?

  • We are committed to basic principles:
  • Maximising health and independence
  • Empowering people to make choices
  • Providing support to access resources
  • Respecting peoples’ right to confidentiality
  • Working with people to make informed decisions

The support on offer is tailored to each individual but can include emotional support regarding testing, diagnosis and treatment; assessment of need under social care legislation (Care Act 2014); referral for equipment and adaptations to maintain independence; information and advice for family members; support, advice and onward referral around lifestyle changes (e.g. for drug or alcohol problems); liaison and advocacy with other agencies; practical support and advice regarding housing and benefits.

With permission, the social workers will work closely with other people involved in your care, such as doctors and nurses, to make sure that you receive the best care available to you. The social work service is confidential and information will only be shared with your consent.

How can I arrange an appointment with a social worker?

An appointment can be arranged through the specialist nursing team. Please talk to your nurse (telephone: 0114 2711882) if you would like to see the social workers. Or you can call the Social Workers directly on 0114 2734984.

Where do appointments with the social workers take place?

Appointments with the Social Workers can take place at Howden House (1 Union Street, Sheffield S1 2SH), at the hospital clinic, or at peoples’ homes.

Information for young people and their families about transition from children’s to adult services

What is transition?

As a child your parents or carers will have made most of the decisions about your health.  When you become a young adult you will need to be able to take on this responsibility for yourself.  The process of us helping you to start to do this is called transition.  Transition is another word for change and moving on.  As you become an adult there will be many changes in your life.  For you, one of the changes is that you will be joining the adult services here at Sheffield Teaching Hospital NHS Foundation Trust.

When will I start the process?

The suggested age for the transition process is between 15 – 19 years old.  This process will start while you are seeing the doctors at the children’s hospital.  This will depend on you and how ready you are to start the process.

Aims of the transition clinic

To support you moving from a child centred hospital to adult centred care, we run a clinic for young people, where both adult and paediatric doctors and nurses are present.  We aim to provide age appropriate care, emotional, psychological and social support to young people aged 15 – 19 years.  We hope to support you to make decisions about your own treatment, help you to understand more about HIV and ultimately take on responsibility for your own health.

Where is the transition clinic?

The clinic will be held within the Stonegrove Centre. The number to call for enquiries is 0114 2265877.

What might the transition team do to help me settle in to the clinic?

The move from the children’s services to adult services is a very important time for you and your family.  The transition team is here to make this change go as well as possible for you and the people that look after you.

The transition team will try to help and support you in many different ways.  These may include:

  • A tour of the outpatient clinic at a convenient time to you.  This will give you an opportunity to ask any questions before your appointment.
  • A named member of the transition team to welcome you, and to help you settle into adult services.  They will keep working with you to help you to settle in, for as long as you feel you need their help.

How long will my appointment last?

Your first appointment at the clinic will usually last approximately 1 ½  hours.  When you come back to the clinic again, future appointments are usually shorter.  We ask you to arrive for your appointment in good time to avoid delays.  However, delays in clinic can occur because some patients need extra support, and clinics can get very busy.  If you have been kept waiting for more than 30 minutes for your appointment then please speak to the nurse in charge of the clinic and bring it to their attention.

What happens when I come to the clinic?

Report to reception to let them know you have arrived.  You will be asked to take a seat.

A nurse will call you to go and have your height, weight and blood pressure checked.  You will also be asked whether you can provide a urine sample to be checked.  This is a good time to let the nurse know if you have a particular problem or to ask any questions you might have about clinic.

What happens next?

Transition clinic gives you the opportunity to see the doctors alone without your parents.  Your parents can come in after you have seen the doctor to be updated.

The children’s doctor will call you to come into a clinic room.  You will meet one of the transition / adult service doctors who you will get to meet at every clinic visit.  The doctors will ask you some questions about yourself and your illness, arrange a physical examination if you need one, and send you to see the specialist nurses.

The children’s specialist nurse will introduce you to the adult / transition service specialist nurse who will become your keyworker.  This nurse will support you during the transition period and will be your point of contact should you or your parents / carers have any questions about clinic or your care.

This specialist nurse will then arrange for you to have your blood taken. This will be done by the children’s nurse if you are under 16 and by the clinic nurses if you are 16 or over.

What happens when I am finally ready to be seen in the adult clinic?

The time spent attending transition clinic varies from person to person, but when you and the transition team feel you are ready to move to adult services it will be arranged. The adult service that you attend after transition is very much up to you.  You may want to remain in Sheffield, or choose a clinic nearer to where you live.

Can my parents still come with me to clinic?

Yes.  Your parents can still attend appointments with you, should you want them to.  The clinic staff would be more than happy to have them there to support you until you are ready to be seen on your own.  However, we do encourage you to see the doctors alone, for at least part of your visit.

Who can I talk to about this if I have any more questions?

You can talk to your doctor or nurse at the children’s hospital clinic who will be able to help you.  Or, you may want to speak to your designated nurse or doctor in the adult services to ask more questions about what to expect when you are there.

Useful contacts

Sheffield Children’s hospital: 0114 2717000
E3 outpatient clinic: 0114 2713560