OCD and Your Rights

1. OCD and Your ‘Rights’ Jude Wynne Advocacy Manager OCD Action

2. What are ‘ Rights’? Where, after all, do universal human rights begin? In small places, close to home so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person: the neighbourhood he lives in; the school or college he attends; the factory, farm or office where he works. Such are the places where every man, woman and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.   Eleanor Roosevelt ‘Commission on Human Rights’, United Nations, New York, March 27th 1958 E   Rights and DutiesRights and Duties

3. Key pieces of legislation: Human Rights Act 1998 Mental Health Act 1983 ( amended 2007) Mental Capacity Act 2005 Equality Act 2010 Absolute, Qualified Absolute, Qualified

4. Equality Act 2010 The Equality Act 2010 brings together discrimination law introduced over four decades through legislation and regulations. It replaces most of the previous discrimination legislation, which is now repealed. The Act covers discrimination because of age, disability, gender reassignment, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex and sexual orientation. These categories are known in the Act as ‘protected characteristics’.

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8. What the law protects against: 

9. What the law protects against

10. What the law protects against

11. Public Sector Equality Duty The Act includes a new Public Sector Equality Duty. It is proposed that the Public Sector Equality Duty will come into force in England and in Scotland from April 2011, and in Wales in Spring/Summer 2011. The duty will cover all the protected grounds: age, disability, gender, gender reassignment, pregnancy and maternity, race, religion and belief and sexual orientation. The Disability Equality Duty in the existing legislation will be replaced by this.

12. Health- NHS Constitution Legislated Rights Your rights: A right is a legal entitlement protected by law. The Constitution sets out a number of rights, which include rights conferred explicitly by law and rights derived from legal obligations imposed on NHS bodies and other healthcare providers. The Constitution brings together these rights in one place but it does not create or replace them. You’ll find a description of the legal basis of each right in the appendix to the NHS Constitution Handbook.

13. What legal underpinning does the Constitution have? The Health Act 2009 includes provisions related to the NHS Constitution. These came into force on 19 January 2010 and place a statutory duty on:NHS bodies, primary care services, and independent and third sector organisations providing NHS care in England to have regard to the NHS Constitution.

14. NHS Legislated rights.. You have the right to receive NHS services free of charge, apart from certain limited exceptions sanctioned by Parliament. You have the right to access NHS services. You will not be refused access on unreasonable grounds.” You have the right to expect your local NHS to assess the health requirements of the local community and to commission and put in place the services to meet those needs as considered necessary. You have the right, in certain circumstances, to go to other European Economic Area countries or Switzerland for treatment which would be available to you through your NHS commissioner.”

15. Your rights under the constitution If you need to go to hospital to see a specialist, you have the right to choose which hospital you're referred to by your GP. This legal right, which was introduced in April 2009, lets you choose from any hospital offering a suitable treatment that meets NHS standards and costs. However this choice does not currently extend to mental health service users.

16. Rights cont.. You have the right not to be unlawfully discriminated against in the provision of NHS services including on grounds of gender, race, religion or belief, sexual orientation, disability (including learning disability or mental illness) or age.” You have the right to access services within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible. The waiting times are described in the Handbook to the NHS Constitution.” You have the right to drugs and treatments that have been recommended by NICE for use in the NHS, if your doctor says they are clinically appropriate for you.”NICE

17. Rights cont.. You have the right to expect local decisions on funding of other drugs and treatments to be made rationally following a proper consideration of the evidence. If the local NHS decides not to fund a drug or treatment you and your doctor feel would be right for you, they will explain that decision to you.” You have the right to be treated with dignity and respect, in accordance with your human rights. You have the right to accept or refuse treatment that is offered to you, and not to be given any physical examination or treatment unless you have given valid consent. If you do not have the capacity to do so, consent must be obtained from a person legally able to act on your behalf, or the treatment must be in your best interests.”

18. Rights cont… You have the right to be given information about your proposed treatment in advance, including any significant risks and any alternative treatments which may be available, and the risks involved in doing nothing.” You have the right to privacy and confidentiality and to expect the NHS to keep your confidential information safe and secure.” You have the right of access to your own health records. These will always be used to manage your treatment in your best interests.”

19. Rights cont.. You have the right to be involved in discussions and decisions about your healthcare, and to be given information to enable you to do this.” You have the right to choose your GP practice, and to be accepted by that practice unless there are reasonable grounds to refuse, in which case you will be informed of those reasons.” You have the right to express a preference for using a particular doctor within your GP practice, and for the practice to try to comply.”

20. Rights cont.. You have the right to make choices about your NHS care and to information to support these choices. The options available to you will develop over time and depend on your individual needs. You can refuse to be involved in research trials. If you do not agree to be involved in research trials, you can withdraw at any time. You have the right to be involved, directly or through representatives, in the planning of healthcare services, the development and consideration of proposals for changes in the way those services are provided, and in decisions to be made affecting the operation of those services.”

21. Rights cont.. You have the right to have any complaint you make about NHS services dealt with efficiently and to have it properly investigated.” You have the right to take your complaint to the independent Health Service Ombudsman, if you are not satisfied with the way your complaint has been dealt with by the NHS.” You have the right to make a claim for judicial review if you think you have been directly affected by an unlawful act or decision of an NHS body.” You have the right to compensation where you have been harmed by negligent treatment.”

22. Stepped Care Approach   The National Institute for Health and Clinical Excellence (NICE) has produced guidelines for NHS staff when working with and treating people with OCD Treatment for OCD should be in line with their recommended ‘stepped care’ approach. The information below is in relation to adults only. To find information about the care of children and adolescents please access the NICE Guidelines: www.nice.org.uk/CG031

23. GPs and IAPTs GP should be the first point of contact and can refer you for a mental health assessment so that OCD can be correctly diagnosed. Low intensity psychological treatments such as Cognitive Behavioural Therapy (CBT) up to ten hours of therapy which can include ‘Exposure Response Prevention’ (ERP). The use of self help materials, CBT by telephone or group CBT. SSRI treatment or combined SSRI and CBT can be offered. Patients are sometimes told that CBT is not available in their area or that waiting lists are long. The Government has introduced a called ‘Improving access to psychological therapies’ (IAPT). To see if the scheme is active in your area, please access www.iapt.nhs.uk. You can ask your GP to refer you to your local IAPTs scheme and You can self refer to an IAPT centre and only need to go through your GP if medication is being considered for you.  

24. Community Mental Health Teams If you have not responded well to treatments, the next ‘step up’ is to be referred by your GP to the Community Mental Health Team(CMHT). This is likely to mean that you see a Psychiatrist or Psychologist (or both) who may be able to help you as well as a range of other people such as social workers, psychiatric nurses or occupational therapists. The team may have a base, like a clinic, where they can see clients. They will also work in a whole range of other places - out-patient clinics, GP surgeries, day-centres, hostels and people's own homes. The team can all offer psychological support, encouragement and practical help. In terms of treatments offered at this stage, NICE recommends the choice of either a course of an SSRI, alternative SSRI or Clomipramine or more intensive CBT (Including ERP) (More than 10 therapist hours per patient). Combined treatments.

25. Special care pathways/expertise in OCD/BDD If you have been seen by your CMHT and have still not made progress then you may be able to be ‘stepped up again’ to more specialist services for OCD/BDD These services may be in your local area, however if they are not your Community Mental Health Team may have to get funding for your treatment agreed by your Local Primary Health Care Trust (PTC). You will also need to be referred by your CMHT, who should ask for an assessment to be undertaken. If funding is agreed for your assessment and it is felt that after the assessment you would benefit from treatment at the unit, then funding usually has to be agreed with your local Primary Health Care Trust (PCT) for your full course of treatment. Units will provide outpatient treatment and some offer inpatient facilities. SSRI or clomipramine, CBT (including ERP), or combination of SSRI or clomipramine and CBT (including ERP)

26. Units for ‘special care’ The units are as follows: Behavioural Cognitive Psychotherapy Unit at the Springfield Hospital London, Centre for Trauma and Anxiety at the Maudsley Hospital London, Anxiety Disorders Residential Unit at the Bethlem Royal Hospital Beckenham, Queen Elizabeth II Hospital Welwyn. In order to support a client with a referral or an appeal for ‘Special Care’- we need to make the case that local resources have not affected a change in their symptoms and that they need more intensive treatment by clinicians who are experienced in the field of OCD.

27. National Commissioning Group If you have severe, treatment resistant OCD you may be able to access a fast track service to specialist treatment via the ‘NCG’ Pathway. For the most severely affected individuals there is now a system for referral to national specialist centres which does not require approval by local funding agencies such as the primary care trust. Because funding is provided centrally, patients who meet the specific criteria will automatically be accepted for relatively rapid treatment for the obsessive compulsive disorder. To obtain more details please see www.iop.kcl.ac.uk/ncg  

28. Inpatient care orintensive treatmentprogrammes OCD or BDD with risk to life, severe self-neglect or Disability SSRI or clomipramine, CBT (including ERP), or combination of SSRI or clomipramine and CBT (including ERP), augmentation strategies, consider admission or special living arrangements Can be accessed via ‘ Special Care’ or NCG

29. If you are not getting what you need…how to complain.. www.pals nhs.uk- will set out complaints pathway. PALs can put you in touch with the Independent complaints advocacy service (ICAS) Please read the NHS Constitution Handbook for further rights re complaints. If you are not satisfied with the outcome of your complaint then you can contact the Parliamentary and Health Ombudsman: Complaints Helpline 0345 015 4033 If you feel you have been treated negligently then you can access legal advice re The Association of Person Injury Lawyers: APIL:www.apil.org.uk www.nhschoices- Constitution/ Your rights www.nice.org.uk/CG031quickrefguide PTC Appeals process-supporting your client through an appeal- please access local policy from PTC or LHB.

30. OCD and Work Key Legislation to be aware of… Equality Act 2010 The Health and Safety at Work Act 1974 The Data Protection Act 1998

31. Equality Act 2010 in relation to work Parts of the Act will come into force in Oct 2010, areas such as disclosure of medical conditions prior to job offers will become unlawful. Code of Practice to accompany Act. Status of the DDA may change after the Equalities Act comes into force..

32. “Reasonable adjustments” under the Equality Act If you have disclosed your OCD to your employer then if they meet the criteria for the Equalities Act then they must under law make ‘reasonable adjustments’ for you. The definition of ‘ reasonable ‘ is currently open for debate but examples include…

33. What are reasonable adjustments? Allowing the employee to have flexible working hour, Allowing the person to take more frequent breaks, Providing a workplace ‘buddy, Changing the person’s work duties, Altering supervision or appraisal methods, Redeploying the person into a different role. Building in time so that people can attend therapy or hospital appointments    

34. Disclosure- Facts.. If you don’t disclose your OCD at work, then you may not be covered by the EQ. Any information you disclose is covered by the Data Protection Act 1998 Once covered by the EQ, employers cannot ‘victimise’ ‘bully’ or ‘harass’ you for having sought protection under this Act. ( This is a statutory obligation under the Act)

35. Health and Safety at Work Act 1974 The Health and Safety at Work Act 1974 states that if your disability has implications for the health and safety of yourself or your colleagues, you must tell your employer. If issues arising from your disability were to result in an accident at work and you had not told your employer about it, you could be held legally responsible.

36. OCD and Education The Equality Act covers all Educational Institutions Reasonable adjustments need to be made for those students who have a disability Each Education establishment should have a ‘Disability Officer’ or similar who can help facilitate adjustments for the student It is suggested that adjustments be recorded formally Universities and colleges often have an ‘Extenuating Circumstances’ scheme, this can help when someone becomes too unwell to finish an essay or hands in work late because of excessive checking. In order for this to work, Students need to follow extended deadlines.

37. Reasonable adjustment ideas A staff or student ‘buddy’ Regular formal/ informal contact with personal tutors/ disability officers Use of ‘ extenuating circumstances’ regarding deadlines Flexibility over attending lectures Use of an Advocate to support student Grants: Disabled student’s GrantGrants: Disabled student’s Grant

38. OCD and Housing If you own your own home, you are less likely to encounter objections to the way you live with your OCD unless the things you do are affecting others. If you are a tenant, then people are more likely to visit your home and you will most probably have agreements or contractual obligations that you might need to fulfil in order to keep your tenancy.

39. Laws and Powers In spite of the fact that there are laws to protect tenants and home owners there are a number of laws and powers that can be used against you, especially if your hoarding or non compliance of housing regulations puts either yourself or other people at risk of harm. Powers such as ‘The public Health Act 1936’ ,The Environmental Protection Act 1990 and ‘ The Housing Act 2004’have been used to deal with hoarding behaviours. These powers generally concentrate on enforcing that you tidy up or get rid of items that are deemed to be causing problems, or that you allow or comply with works on your property.

40. Hoarding If you do hoard or have other OCD related Housing Issues, you may find that there are times when you may come into conflict with authorities such as the Police, Social Services and Housing Authorities. It may be very difficult for you to talk about your OCD (and you may not wish to disclose it) and most people are unlikely to understand your OCD and how it affects you. Pressure put upon you may not only affect your OCD but may be a breach of your rights under legalisation such as ‘The Human Rights Act 1998’ and ‘ The Equality Act 2010’.

41. Hoarding and the Mental Health Act 1983 ( amended 2007) If public authorities believe that your mental health has deteriorated to a state where you are putting yourself ( usually because of severe self neglect) or others at serious risk of harm the ‘Mental Health Act 1983’ or the ‘National Assistance Act 1948’ can be used to remove or detain you . The use of these Acts should be reserved for exceptional circumstances where there is a significant threat to life and well being.

42. What should happen.. People who hoard or are having other OCD related problems, are advised in the first instance contact their local Community Mental Health Teams for advice and support. Mental Health Care Professionals should be encouraged to work closely with Environmental Health Officers and Social Services to first engage fully with the person . This is so they can get better understanding of why hoarding/ other issues are occurring and as a result offer as much support as they can.

43. Where to get support Community Legal Advice Service (Funded by Government Legal Aid for residents in England and Wales) Helpline: 0845 345 4 345 www.communitylegaladvice.org.uk- helpful website. They deal with the following: family and personal; education and training, debt, money and tax, benefits and tax credits, employment, government law and rights, housing and homelessness.  Shelter is the leading housing charity in the UK. advice service and 24 hour freephone telephone line, Shelterline. They can also direct you towards local housing organisations in your area. Shelterline: 0808 800 444 Web: www.shelter.org.uk Law Centres Federations www.lawcentres.org.uk

44. Support.. The Disability Law Service (DLS) :They provide information and advice to disabled people.www.dls.org.uk/ Equality and Human Rights Commission www.equalityhumanrights.com/advice-and-guidance CAB Information on finding accommodation; tenancy types; problems with landlords; buying and selling a home; disrepair; home improvements; planning; ...www.adviceguide.org.uk/index/family_parent/housing.htm  

45. Detention under the Mental Health Act 1983 ( amended 2007) What happens when you are sectioned? When you are sectioned three people must agree that you need to be detained in hospital (there are exceptions in urgent situations). Usually, the three people would consist of an Approved Mental Health Professional (AMHP)* or nearest relative as specified by the Act, a doctor who has received special training, and a registered medical practitioner. If possible, one of the doctors should already know you. The two doctors must agree that you are suffering from a mental disorder of a nature or degree which warrants your detention in a hospital for assessment or treatment and that you ought to be detained in the interests of your own health, your own safety or with a view to the protection of other people.’

46. Who can be detained or ‘ Sectioned’? In 2007 the MHA’s definition of who could be sectioned widened to include anyone who has a ‘disorder or disability of the mind’. This remit now includes the category of ‘personality disorder ‘which was not included in the original Act brought out in 1983.

47. Common Types of Sections Section 2 is for up to 28 days and this is so you can be assessed as to what you need for your care and treatment Section 3 is an admission for treatment for up to 6 months Section 4 is an emergency admission for assessment for up to 72 hours on recommendation of the doctor in charge of treatment. Section 135 is a court warrant, authorising the police, a doctor and an AMHP to gain entry into a private property and if necessary to remove a person to a place of safety for up to 72 hours. Section 136 is the police power to remove a person from a public place to a place of safety for upt0 72 hours. Section 117 is an aftercare section that applies once you have left hospital. It specifies that it is the duty of the local health authority and local social services to ensure that appropriate aftercare services are made available to you.

48. ‘Appropriate Medical Treatment’ A patient cannot be detained for treatment unless “Appropriate Medical Treatment” is available for the patient’s particular condition. This has particular relevance to OCD as (in theory); you couldn’t be detained unless the accepted treatment was available

49. Independent Mental Health Advocates Once you are detained you have a right to see an ‘Independent Mental Health Advocate’ ( IMHA). The IMHA will give you information and support during your detention. An IMHA is also duty to inform you about your rights, which include having access to a lawyer if you want to dispute your detention.

50. Least restrictive options and Detention under the Mental Health Act, is a serious matter, as in effect you will be deprived of your liberty by the State. This is why the State must protect your rights and must use the least restrictive options available. You have the right to appeal against detention to a Tribunal during the first 14 days that you are detained. You can also ask for a list of mental health solicitors who will be able to advise and represent you. People detained under the Mental Health Act are entitled to free legal representation at Tribunals under the Legal Aid scheme.

51. Who will be in charge of your care? The person with overall charge of your care whilst you are in hospital is called the’ Responsible Clinician’.(RC). Your doctors and nurses will be charged with making ‘best interest’ decisions about your care and treatment. They should however continue to involve, inform and consult you in all treatments and follow the 5 ‘ Guiding Principles’ of the amended Mental Health Act . These principles are clearly set out in the Code of Practice which accompanies the Act. The code makes it clear that

52. Guiding Principles of the MHA The Purpose Principle: People must try to use the law to help other people with mental health problems to be as well as possible and to prevent harm to other people. The Least Restriction Principle: The patient must have as much freedom as possible, as long as this does not put them or anyone else in danger The Respect Principle: People who make decisions about the patient must respect the different cultural backgrounds and needs of patients. They should not discriminate against them because of their age, race, religion, gender, culture or sexual orientation.

53. Guiding Principles of the MHA The Participation Principle: Patients should be given the opportunity, as far as possible to be involved ion all decisions about their own care and treatment. The ‘Effectiveness, Efficiency and Equity’ Principle: Patients should receive a good and fair service which does not waste money, time or other valuable resources.

54. Nearest Relative.. Can my family be consulted about my detention? The Mental Health Act 1983 (2007) gives a number of rights and responsibilities to what are called ‘ The nearest relative’. The nearest relative is not necessarily the nest of kin, the Act decides who he or she is but the usual order is as follows: Husband or wife or civil partner ( including those living together as husband and wife or civil partner for at least 6 months) Son or daughter Father or mother Brother or sister Grandparent Grandchild Uncle or aunt Niece or nephew 

55. Community Treatment Orders ( CTOs) Supervised Community Treatment or ‘Community Treatment Orders’ This replaces the old notion of ‘supervised discharge’. If you have been detained and it is necessary for your health and safety and for the protection of other people that you continue to receive treatment, then this treatment can be administered in the community, however if you breach the treatment order you can be recalled into hospital by your ‘ Responsible Clinician’.

56. Advocacy helps to..

57. OCD Action Advocacy Service Jude Wynne jude@ocdaction.org.uk OCD Action Suite 506-509, Davina House, 137-149 Goswell Road, London EC1V 7ET. Telephone: 0845 3906234 ( Advocacy Line)