Operation demist booklet

about using mental health services in Wakefield and Kirklees

Operation Demist from our experience to yours

Dear Reader, Welcome to the fourth edition of I wish someone had told me, produced by service users, for service users. We have all thought at some time “I wish someone had told me that before” but either we didn‟t know anyone who would tell us or we didn‟t feel like we could ask the people working with us.

Although we can‟t answer every question, we hope that the questions we answer in this booklet will help you. Please get in touch with us and tell us what you think or if you have any suggestions.

Best wishes, Alison, Ian, Ruth, Lesley, Rodney and Robyn, Operation Demist My information Care Co-ordinator Name ______________________ Phone ____________________ GP Name ______________________ Phone ____________________ Other services: Name ______________________ Phone ____________________ Name ______________________ Phone ____________________ Name ______________________ Phone ____________________ In a crisis: _____________________________________________ My medication(s) are: ____________________________________ ____________________________________________________ 5th edition March 2014 2

Copyright Operation Demist 2014

Contents

Page

How can I find out more about my diagnosis or medication?

4

What workers may be involved in my care and what are their roles?

5

What's the difference between a psychiatrist and a psychologist?

6

How can I find out who my care co-ordinator is?

6

I don't get on with my worker, what can I do?

7

Do I have to see my worker at home?

7

How should mental health workers behave towards me?

8

Can I give my worker a gift?

8

Can I take a friend or helper to my appointments?

9

Can I be forced to go into hospital? Can I appeal?

9

Do I get a choice about what treatment I have?

10

Can I be forced to take medication?

11

Behind the scenes at Operation Demist

12

What are side effects of medication? How do I cope with them?

14

I think my meds are affecting my sex life. What should I do?

15

Where can I get help with benefits and money problems?

15

Should I make a complaint?

16

Can I read what my doctor has written about me?

17

Can I change my GP?

17

Where can I go to get help in a crisis or out of hours?

18

What is a care plan?

19

What is an advance decision?

19

What is CPA?

20

Directory

23

Contact Operation Demist

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How can I find out more about my diagnosis or medication?

There are many different ways you can find out more about your diagnosis or your medication.

If you have specific questions about your mental health condition, your worker is a good starting point. If they donâ€&#x;t know the answer, they should be able to find out or direct you to somewhere where you can find out.

Many mental health charities and organisations produce information leaflets about different mental health conditions - there might be some available in the waiting room at the service you go to, or you can ask your worker if they can give some leaflets. Some websites and phone numbers are listed below and in the directory at the back of this booklet if you want to get hold of copies yourself.

If you want to know more about your medication, you can ask your doctor or pharmacist. There are also information leaflets about different groups of medications (e.g. antidepressants or antipsychotics) which you might find helpful. For information leaflets and frequently asked questions you can also go to www.choiceandmedication.org/swyp If you are looking on the internet, obviously not every site has accurate and trustworthy information. If youâ€&#x;re thinking about stopping taking your medication, talk to your worker or doctor first.

Mind has information leaflets about conditions, treatment, medications and your rights - you can call their infoline on 0300 123 3393 or visit www.mind.org.uk The Royal College of Psychiatrists has information leaflets about mental health conditions and medications on their website, www.rcpsych.ac.uk 4

What workers may be involved in my care and what are their roles?

An advocate is an independent worker who does not work for health or social care services. Advocates help people to have their voices heard and their wishes represented.

A care-coordinator can be from any of the professions below (most often they will be a nurse, social worker or occupational therapist). Your care-coordinator is responsible for putting together a care plan with you, and making sure that it is followed and reviewed when necessary. They should make sure that your health care and other care needs are being met, and refer you to other services if you need them.

A community psychiatric nurse (CPN) is a trained mental health nurse. CPNs are often care-coordinators. A CPN may also offer help with relaxation or anxiety management, for example.

An occupational therapist (OT) is trained to help people to be able to do things that they want to do - this can be anything from daily living tasks like cooking and shopping, to hobbies and employment. Some occupational therapists are trained in psychological therapies such as cognitive behavioural therapy (CBT).

A psychiatrist is a doctor who specialises in mental health. In mental health services you may also see a doctor who is in training to be a psychiatrist, or a doctor who has not yet chosen their speciality. All doctors can prescribe medication.

A psychologist sees people for psychological (talking) therapies. Talking therapies can also be provided by counsellors and some other kinds of worker.

A social worker can have a wide variety of roles. In mental health, although they are employed by social services departments and not the NHS, they work in teams with health care staff. A social worker is often a person's care-coordinator.

A support worker provides practical support to help a person do things they would find hard to do alone. Unlike the other workers listed here, support workers can't be care-coordinators.

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What’s the difference between a Psychiatrist and a Psychologist?

A Psychiatrist is a medically trained doctor who specialises in mental health conditions. There are other doctors you might see in mental health services. Psychiatrists and other doctors can prescribe drugs and make diagnoses, but they don‟t usually see people for talking therapies.

Psychologists don‟t usually have any medical training and don‟t prescribe drugs. If you are seeing a psychologist, it will probably be for some kind of talking therapy. Talking therapies aim to help people who have mental health problems by helping them to have a better understanding and awareness of themselves.

How can I find out who my Care Co-ordinator is?

Many people using mental health services have several different workers across different services. One of these workers will be your care co-ordinator. They will make sure you are receiving the services you need; and that your care plan is being followed and reviewed regularly. If you have only one worker, then they are your care co-ordinator.

The best way to find out who your care co-ordinator is, is to ask one of your workers. They should know who your care co-ordinator is, or be able to find out for you. If you don‟t know who your care co-ordinator is, you are not alone, and you shouldn‟t feel shy about asking if you have one and who they are.

Alternatively, if you attend a mental health support organisation regularly, you could ask one of the workers there.

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I don’t get on with my worker, what can I do?

Nearly everyone, whether they have a mental health condition or not, has someone they don‟t get along with. It is especially hard if you need to talk about difficult experiences or feelings and you don‟t feel that you want to share them with someone you don‟t like. It is usually possible to see a different worker.

If you don‟t feel able to ask in person, you can always write a letter instead. This could be addressed to your worker or to the team manager. You can also talk to South West Yorkshire Partnership NHS Foundation Trust‟s customer services team: Phone 0800 587 2108 or email customer.services@swyt.nhs.uk

Do I have to see my worker at home?

Your CPN or social worker (and maybe some other workers) may sometimes need to see where you live to make sure it is safe and you are coping with everyday living tasks (e.g. cleaning). If you need an assessment for equipment or extra help at home, your worker might need to come to your home then, too. For most appointments you will probably be able to arrange to see your CPN or social worker in a place that you feel comfortable, which might be a health centre, a GP surgery or even a cafe or park.

If you aren‟t comfortable with the place you are seeing one of your workers, then they will want to know this. If you let them know, they could be able to make arrangements to make it easier for you.

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How should mental health workers behave towards me ?

All mental health workers must treat you in a way which respects your dignity and human rights.

Workers must act in a way which is focused on your best interests. They should tell you why they are doing what they do, and give clear answers to your questions. They must listen to your requests and concerns, and where possible alter the way they work to make sure you are comfortable with it. If you have a care plan they should follow it. They will raise any suggestions about changes to your care with you, your carer (if you want them to be involved) and your advocate, if you have one; and your care co-ordinator.

Workers must behave professionally at all times, remembering that they are there to support you. They should be friendly and polite but they should not be over-familiar with you, and should never take advantage of their position by behaving in a way which confuses their job with any other sort of relationship. In return, workers will expect you to follow your care plan and other agreed plans for your care, and to tell them if you have any problems with your care or care plan.

Can I give my worker a gift?

Obviously, it is a good thing if you get on well with your worker, and if you want, for example, to give them a Christmas or other greeting card, this would be OK. Anything more might cause them difficulty, however, since their employers have rules to prevent people being exploited. Gifts are best avoided.

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Can I take a friend or helper to my appointments?

Usually it is fine to take someone with you to your appointments.

Sometimes the person you are seeing may want to talk to you alone. If you are having counselling or talking therapies then you probably wonâ€&#x;t be able to take a friend or relative into these appointments with you.

Can I be forced to go into hospital?

Can I appeal?

The Mental Health Act 1983 allows some people to be detained in hospital for a set period of time, if they are a danger to themselves or other people. When a person is detained in hospital it's sometimes referred to as being 'sectioned', because the parts of the Act are called „sectionsâ€&#x;.

Before a person can be detained for more than a few hours, two doctors and an approved mental health professional (a specially trained social worker, mental health nurse, occupational therapist or psychologist) must agree that they need to be detained.

Mental health law is complicated, and it is not a simple process to detain someone. Also, people who are detained under the Mental Health Act have many rights. If you are detained, you should have these rights explained to you, and you will also be able to speak to a solicitor and an independent mental health advocate for free.

Can I appeal?

If you are detained then you will be told about your rights and how you can appeal. If you think you have been wrongly detained or if you think you are well enough to go home, then it is possible to appeal. You could speak to the staff in the hospital, or talk to your solicitor and/or your advocate to find out what to do.

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Do I get a choice about what treatment I have?

If you want a particular treatment, but your doctor or other workers don‟t think it would be suitable, then you may well not be able to get it.

However, if you want to refuse a treatment then you have the right to do so, as long as you are not detained in hospital under the Mental Health Act (“sectioned”). Some people may be subject to a Community Treatment Order. For more information about this, please see the question “Can I be forced to take medication?”

You and your healthcare workers will, ideally, be working together to find the care and treatment that works best for you. If you don‟t agree with a suggested treatment, then the best thing to do is to talk it through with your workers. You may be able to agree on a different treatment, or you may find that with more information you are willing to try the suggested treatment.

Here are some questions you might want to ask if you are unsure about a treatment that is suggested for you: How will this treatment help me?

Why do you think this treatment is the right one for me?

Are there any possible downsides or negative effects from this treatment?

Are there any alternative kinds of treatment?

What makes this suggested treatment better for me than the alternatives?

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Can I be forced to take medication?

If you are 18 and over and are not in hospital, then usually you cannot be forced to take medication. Sometimes people who have been detained under the Mental Health Act (“sectioned”) are able to leave hospital but with certain conditions. One of these conditions could be taking medication: if this is the case and the person does not take the medication, they could be forced to go back into hospital. If this does not apply to you, then you cannot be forced to take medication if you are not in hospital.

However, if you are at risk of harming yourself or someone else, then you might be detained and forced to go into hospital, where you could have no choice about taking medication.

You might want to read the question “Do I get a choice about what treatment I have?” if you are not sure about a particular treatment that is suggested for you.

If you have been detained and you are in hospital you can be made to take medication under certain circumstances. If you have been detained, then you can ask for advocacy services for more help and advice. If you have left hospital but have been given conditions (for example, if you are on a Community Treatment Order [CTO]) then you will also be able to access advocacy services.

If you are under 18, then the law is different and more complicated. If you are worried about being forced to have treatment you don‟t want, you should ask for advocacy; and you may be able to get specialist legal advice.

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s e n e c s e h t d Behin The Operation Demist Project Review Group includes service users, a carer and staff from mental health services.

The group gives friendly criticism and helps keep the project on track!

ents Acknowledgem Producing this booklet would not have been possible without the help of many people and organisations. Thanks must go to: South West Yorkshire Partnership Foundation NHS Trust for organising the Change Lab where the idea for Operation Demist was born, providing funding and especially to our project sponsor Tim Breedon.

Cloverleaf Advocacy, and project co-ordinators Karen Graham and Yakub Rawat.

Our volunteers and our Project Review Group: Ruth, Lesley, Rodney, Robyn, Dorothy, Hubert, Chris and Lynne; and previous volunteers Phil and Paula.

All the service users, carers, and staff who talked to us, helped us and gave us feedback.

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t s i m e D n o i t a r e at Op am e t e eet th

M

An interview with Ian Heraty, Operation Demist Project Worker When did you first start experiencing mental health problems and did you get help straight away?

I was in my late teens and early twenties, and I definitely didn‟t get help straight away. It took a long time for me to get a referral from my GP to see a CPN [community psychiatric nurse].

What has helped you in your recovery?

My own resourcefulness and perseverance, as well as keeping in touch with friends and having a steady relationship. Getting the right doctor and care team has been very important too.

Is there any advice you’d give to yourself when you began your journey to recovery?

Keep an open mind about recovery and take it as it comes - don‟t put pressure on yourself to recover quickly. Use your family and friends for support, and use advocacy services too.

What’s your top tip for recovery?

Take your time and do things that you enjoy. For me, that was sports golf and football.

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What are side effects of medication?

How do I cope with them?

Side effects are effects that a drug has on the body that are not intended.

Mostly side effects are negative, but sometimes side effects can be positive (such as a side effect that makes you drowsy and helps you get to sleep).

Doctors will often pick a drug for a patient based on the drug‟s known side effects and how they will impact on their health. For example, a doctor would avoid prescribing an anti-depressant drug that affected the liver for a patient with liver problems. Because drugs for mental health conditions are intended to act on the brain, they can have very wide ranges of side effects. For each kind of drug (anti-depressants, anti-psychotics and so on) there are many drugs with different kinds of side effects. When your doctor prescribes a drug for you, they should tell you what the side effects are, and there will also be a leaflet in the medication packet.

If you are having problems because of the side effects of your medication, you should talk to your doctor (or your care co-ordinator, if you have one, who could talk to the doctor on your behalf). What they will be able to do depends on your individual situation, but it may be possible to change the dose, or change when you take your medication to minimise the problems the side effects are causing. If the side effects are really bad, then you may be able to swap to a different drug. The worst thing you can do is stop taking your medication without talking to your doctor.

You can also talk to a pharmacist if you are concerned about your medication or if you don‟t understand the leaflet in the medication packet. If you are taking several medications or if you‟re taking medication for a long time, you can ask your pharmacist for a medicines review.

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I think my meds are affecting my sex life. What should I do?

This happens to a lot of people taking medication for mental health conditions, but it‟s understandably something people feel embarrassed to ask about.

The best thing you can do is talk to your doctor. We promise you won‟t be the first person who they‟ve seen who has had sexual side effects from their medication. Some medications for mental health conditions cause more sexual side effects than others, and your doctor may be able to adjust your medication so that the side effects are easier to deal with.

Where can I get help with benefits and money problems?

Money and benefits are a problem for many people who have mental health conditions. If you are worried about money, it can be a good idea to talk to your workers about this - they will want to know because it may be affecting your mental health and other important things like housing and looking after yourself and your family (if you have one).

Your worker should also be able to signpost you to organisations that can help you, and may be able to help you to access them too.

The Citizens Advice Bureau can help with benefits and also if you have debt problems. Contact details for local offices are in the directory at the back of this booklet.

In Wakefield, you can also contact DIAL Wakefield for anything directly related to disability, including help with benefits, on 01977 723933, or by email: advice@dialwakefield.co.uk 15

Should I make a complaint?

It is completely up to you if you want to make a complaint or not. You might want to raise an issue without it being a formal complaint. South West Yorkshire Partnership Foundation Trust‟s customer services accept comments, complaints, concerns and compliments so you can contact them (phone 0800 587 2108) about anything that‟s happened with your health care that you want the Trust to know about.

Here are some of the positives and negatives about making a complaint that you could think about: Pros of making a complaint: It‟s an opportunity to get some closure You can ask for an apology The service will know about an issue and could improve the experience for other people Cons of making a complaint: It can be frustrating If you‟re not well, you might feel like it takes too much energy or is too complicated You could be disappointed if you don‟t get the outcome you hoped for Your care shouldn‟t be affected if you make a complaint - it‟s your right to do so. If you do complain and you get a response that you‟re not happy with, then you can raise the complaint to the next level.

For NHS services, you can do this by taking it to the Parliamentary and Health Service Ombudsman. You can contact them using their helpline (0345 015 4033) or visit their website www.ombudsman.org.uk for more information.

For social care services provided by your local council, you can take it to the Local Government Ombudsman. Their helpline number is 0300 061 0614 and their website is www.lgo.org.uk You can also ask for complaints advocacy - this is a specialist service which will help you with the process of making a complaint about NHS services. This service changed in April 2013: contact your local Citizens Advice Bureau (see page 24) to find out how to access it.

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Can I read what my doctor has written about me?

You can usually read your healthcare records, but there is a formal process to go through before you can see them. The Data Protection Act 1998 is the piece of law that says what your rights are if you want to see information about you that an organisation holds. There are certain times when you may not be able to see your healthcare records. If your doctor believes that reading your record may harm you, then you may not be able to see it. Sometimes parts of the record may be removed or blanked out. You are also not allowed to read things written about other people („third parties‟) in your records unless they give their permission.

If you want to see your records, you need to write to Subject Access Officer, Fieldhead Hospital, Ouchthorpe Lane, Wakefield WF1 3SP. They will send a form to you to fill in with the details. You can also ask for copies of records, if you wish. The law says that organisations can make a charge when you want to access a record or have copies, but you should be told about this in advance.

Can I change my G.P.?

Most practices have several doctors working there, and if you don‟t get on well with one GP you can ask to see a different one. You can also change your GP practice if you want to. You would need to contact the practice you want to change to and ask to register as a new patient.

Most GP practices take patients from a particular area, and if you live outside this area you will probably not be able to register with that practice. If you change practice, you don‟t have to give a reason if you don‟t want to.

If you need more help or information about local GP services, you can contact the West Yorkshire PALS (Patient Advice and Liaison Service) on 0800 0525 270 or by email at: WestYorksPALS@nhs.net.

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Where can I go to get help in a crisis or out of hours?

The first thing to do is to check your care plan. If you have one, it should say what to do in a crisis. If this is not possible, then suggestions for what you could do are listed below.

In normal office hours (daytimes, Mondays to Fridays): You can call the service you normally use - they can generally arrange for you to talk to a duty worker in an emergency.

You can call or go to your GP practice and ask to see the duty doctor.

Outside normal office hours (weekends, evenings and bank holidays): You can call NHS 111 and ask to see the out of hours GP service.

If you live in Kirklees, you can call the Kirklees Single Point of Access (SPA) on 01924 284555.

At any time If someoneâ€&#x;s life is in danger, you can call 999 You can also go to Accident and Emergency at a hospital.

There are also many help lines and websites you can use if you want emotional support or just want to talk. Some are listed below, and check the directory on page 23 for more.

Samaritans: phone 08457 90 90 90, email jo@samaritans.org or go to www.samaritans.org Saneline: phone 0845 767 800 (6pm -11pm) or go to www.sane.org.uk If you need to contact social care services in an emergency, see the numbers on page 24.

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What is a care plan?

A care plan is an agreement between you and all the people involved in your care and support, like doctors, psychiatric nurses, social workers and family members, so that everyone knows what they are supposed to be doing. You should be involved in putting together your care plan in partnership with your workers, and your carer can be involved if you wish.

A care plan sets out all the actions expected of each individual, what results are expected, and how these will be measured. It will also state what should happen if you have a crisis, who is to be contacted, where you would prefer to be treated, what support your family will get etc.

You and your workers will meet regularly to review the care plan and make changes if needed.

All the personal information in your care plan will normally only be shared by the named participants. You can decide how much your family knows about your ongoing care.

What is an advance decision?

Advance decisions (sometimes called advance directives) and advance statements are ways of expressing your wishes for what you would want to happen if you became too unwell to make decisions for yourself.

Advance decisions can be used to refuse medical treatments and can be legally binding (so doctors must follow them), although there are restrictions on what you can refuse.

Advance statements can be used to say what you would want to happen with things like your dietary requirements, religious beliefs and how you want your carers to be involved. They're not legally binding, but they can help to make sure your wishes are known by the workers involved in your care.

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What is CPA?

CPA stands for Care Programme Approach, and it is used in NHS mental health services across England and Wales. It is a formal system to make sure that people who have more severe mental health problems or more complex needs get the right health care and support for their daily living needs, as well as planning for recovery.

Not everyone who uses mental health services will qualify for CPA - if you don't, your care may be called 'Standard Care'. Both Standard Care and CPA include assessment, care planning and reviews.

If you are on CPA or Standard Care you will have a care co-ordinator.

The care co-ordinator's role is an important part of CPA, because many people under CPA will have care or support from several different services such as housing and social care as well as mental health services.

What difference does it make if I get CPA or Standard Care?

Both CPA and Standard Care involve assessment, care planning and reviews, and no matter which you receive you should still be involved in planning and reviewing your care in partnership with your worker or workers. If you are on Standard Care your care plan may be in the form of a short letter. A care plan for someone on CPA can be quite long, because it has to cover the complex needs that person has.

If you want to know more about CPA, South West Yorkshire Partnership NHS Trust has its own leaflet for people using its services.

You can contact the Trustâ€&#x;s customer services (phone 0800 587 2108) to get a copy, or read it online at www.southwestyorkshire.nhs.uk/ service-users-and-carers/your-rights/care-program-approach/

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Places you can go for more information and help To find out about NHS services, complaints, comments and concerns: South West Yorkshire Partnership NHS Foundation Trust (SWYFT) 0800 587 2108 (customer services) www.southwestyorkshire.nhs.uk/ West Yorkshire PALS (Patient Advice and Liaison Service) for information about GP services: 0800 0525 270 or by email at: WestYorksPALS@nhs.net Mental health information Mind (information about mental health conditions, treatments and rights) 0300 123 3393 www.mind.org.uk Rethink (information and advice about mental health conditions) 0300 5000 927 www.rethink.org Mental Health Care (information about psychosis) www.mentalhealthcare.org.uk Depression Alliance 0800 587 2108 www.depressionalliance.org/ Bipolar UK 0800 587 2108 www.bipolaruk.org.uk/ No Panic (anxiety, phobias and OCD) 0800 138 8889 www.nopanic.org.uk Help in a crisis and emotional support Samaritans: phone 08457 90 90 90, email jo@samaritans.org or go to www.samaritans.org Saneline: phone 0845 767 800 (6pm -11pm) or go to www.sane.org.uk 23

Places you can go for more information and help (continued) Social care helplines (24 hours a day, 7 days a week) Kirklees: Gateway to Care: 01484 414933 Wakefield: Social Care Direct: 0845 8 503 503 Benefits, debt and other advice: Citizens Advice Bureau: Self-help website: www.adviceguide.org.uk Wakefield 0844 499 4138 www.wakefielddistrictcab.co.uk Kirklees 0844 848 7970 www.citizensadvice.org.uk/kirkleescab Drug and alcohol problems Narcotics Anonymous 0300 999 1212 www.ukna.org.uk Alcoholics Anonymous 0845 769 7555 www.alcoholicsanonymous.org.uk Frank 0800 776600 www.talktofrank.com

Contact Operation Demist: Write to us: C/O Cloverleaf Advocacy 9 Wellington Road Dewsbury WF13 1HF Call us on 01924 454875 (Mon-Fri, 9am - 5pm)

Email us at: operation.demist@cloverleaf-advocacy.co.uk

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