Response to Patients' Rights Bill for users of the NHS in Scotland

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support (through training programmes and support groups) in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website (www.alzscot.org) and our wide range of publications.

We welcome the opportunity to comment on the contents of a Patients Rights Bill for users of NHS Scotland. People with dementia are users of most NHS Scotland services. The need to meet their ongoing primary and secondary health care needs should be given full consideration given the progressive nature of the illness and the projected increase in the level of incidence. Because age is the major risk factor for dementia, the likelihood of a patient having multiple health problems is high and this presents a particular challenge to the NHS. The number of people with dementia will increase dramatically from approximately 63,500 in 2009 to 108,000 by 2031.

General points

Patients responsibilities

We are concerned about the implications for a person’s rights if they are unable to fulfil their responsibilities. There are a number of areas of particular concern in relation to people with dementia. For example patients will be responsible for complying with advice on medication and treatment; and raising legitimate concerns about the safety of their care and patients will be responsible for seeking and using information appropriately to support their own health.

Consideration of people who are unable to fulfil their responsibilities as a result of lack of capacity should be made ahead of formulating legislation. It is essential those who are unable to meet their responsibilities under the Bill due to declining capacity to consent to health care decisions, receive the same level of care and treatment as those who are able to implement fully their responsibilities.

The Bill should have a separate section which recognises the different position of adults who lack capacity to consent to their care and treatment. It needs to explicitly set out the rights of patients and their carers under the Adults with Incapacity (Scotland) Act, Part 5, Medical Treatment and Research and the regard that health care professionals must have to the principles of the Act.

Carers

There is insufficient acknowledgement of the role of carers in the consultation paper. Carers play a crucial role in assisting people with dementia to receive their rights and meet their responsibilities. The lack of consideration of carers is particularly evident under the patient responsibilities.

Research shows that carers of people with dementia are at high risk of depression and other stress related illnesses and this requires greater recognition by health care professionals to prevent a crisis and reduce emergency admission to hospital of either carer or person with dementia.

Advocacy for carers

The right to advocacy for carers should be included in the Patients Rights Bill. In situations where the patient lacks capacity they will be acting on their behalf and should therefore have a right to advocacy to assist them understanding the options and pursuing care for the patient. This would reflect the right to advocacy for adults with a mental disorder which is included under the Mental Health (Care and Treatment) (Scotland) Act 2003.

Proposed rights

Access

The proposed right to access is biased towards acute care and treatment. Access to other types of healthcare services is equally important. Early diagnosis of dementia is important so that people can be involved in discussions about their present and later care and make decisions about their future. Diagnostic services and post diagnostic support services are patchy across the NHS in Scotland. It is important that the same level of service is available across the different NHS health board boundaries, particularly given the projected increase in the number of people with dementia.

Respect

It is essential that health care staff have an understanding of the impact of dementia on individuals in order to respond respectfully and with regard for their dignity and privacy. There is a general lack of awareness of dementia in the NHS. This has been evidenced in the report by the Mental Welfare Commission, Older and Wiser (2007). In hospital people with dementia may risk malnutrition because staff do not realise they need help to eat or drink and do not give the necessary time to assist; 48% of consultants were not aware of the SIGN guidelines on the management of patients with dementia.

A recent report by the Scottish Parliament Cross Party Group on Alzheimer’s found there was no standard system for the care of people with dementia attending NHS accident and emergency. We receive distressing reports from carers about the poor level of care in some NHS continuing care units – we also receive reports of excellent care. Every patient should have a right to a high standard of care and carers should not fear reprisals (as many, unfortunately, still do) if they make complaints.

Dementia training is essential for health care staff to have a better understanding of this complex condition to enable them to treat the person with dignity and respect.

Communication

As with the proposed right of dignity and respect, a right to appropriate communication for people with dementia depends on an understanding of the illness. Caring for people with dementia can be challenging and staff require training in understanding the illness and positive approaches to communication and care. This is essential, not least for a proper assessment of the capacity of the person to consent to care and treatment.

If the patient is assessed as lacking capacity then other rights under the Adults with Incapacity (Scotland) Act, Part 5, Medical Treatment and Research, come into play and ought, in law, to be implemented. However compliance by hospital doctors is patchy and an apparent non-compliance by many GPs is even more concerning. Recent research into the inappropriate use of anti-psychotic drugs for people with dementia shows that, in most cases, treatment is not given for the benefit of the patient (it is indeed harmful to them), but for the benefit of care home staff who lack training in dementia care. This is a major clinical and human rights issue. The right to appropriate treatment in accordance with the principles of the Adults with
Incapacity Act should be spelt out within the Bill.

Participation

The consultation paper suggests that every household will receive a copy of their rights. An estimated 40% of people with dementia (25,000) live in care homes and other long term care institutions. People living in care homes can often be excluded from community health services, resulting in neglect of eyes, teeth and feet, which increases their disabilities and reduces their quality of life. It is important that consideration is given to how those living in care homes, their families and friends can be informed of these rights under the Patients Rights Bill.

Privacy and confidentiality

The right to privacy and confidentiality are important but are different issues and should be treated under separate headings within the Bill. Privacy of person (in terms of intimate personal care), a right to personal space and possessions is different to that of confidentiality concerning access to personal data. Again, the rights of carers to health care information where the adult lacks capacity to consent, and their right to be consulted on health care matters, under the Adults with Incapacity Act, should be recognised in the Bill.