Introduction
Sense is a national charity that supports and campaigns for children and adults who are deafblind. We provide specialist information, advice and services to deafblind people, their families, carers and the professionals who work with them. In addition, we support people who have sensory impairments with additional disabilities.
Many deafblind people have additional learning disabilities and may lack the capacity to make, or need support to make, many decisions. Many of these people will require communication support such as interpreters, and some may have no formal means of communication, whilst still being able to express preferences, wishes and feelings.
In drawing up this response Sense has consulted with staff working at all levels in the organisation including senior managers, managers of services and front line support workers. We have also consulted with families of people who use our services.
In general the Code is clear and a good reflection of the Act. This response covers some general issues and then goes on to address specific concerns. We have not responded on every chapter, only those which particularly affect the people we work with.
Scenarios
In the main the scenarios are useful, but some could be made more useful. There are also places where additional scenarios could be helpful. They are most needed where an issue is not easy or clear cut. However, many of the current scenarios either cover clear cut situations or do not give an indication of what outcome would be reasonable. We have indicated examples of this. We have concerns about some of the scenarios and have indicated these.
Communication difficulties
In general the Code as currently drafted does not have sufficient emphasis on people who have communication difficulties. There are a range of issues relating to communication.
- For some people, for instance British Sign Language or deafblind manual users, the use of an appropriately trained interpreter would be appropriate. Care needs to be taken to book an interpreter who uses the correct language and has appropriate skills. The Code needs to emphasise this.
- Sense works with many people who do not use any formal communication, for whom the only people able to interpret their wishes and feelings are those who know the person well. This can be family members or paid carers.
- There is also no recognition of the potentially communicative nature of behaviour. For some people, challenging behaviour represents the only method of communicating something that is extremely important to them. Where challenging behaviour is shown by people who have difficulties with formal communication, a functional assessment needs to be made to establish what purpose the behaviour is showing and what it may be communicating.
We feel that some more examples covering these issues would be helpful and include a number of suggested scenarios.
Staff in care homes
Staff and managers of our care homes have experienced some difficulties understanding the Code as it relates to their situation. The Code emphasises, quite correctly, the decision-specific nature of the Act. However, this means that all the examples and case studies tend to focus on individual decisions in isolation, which does not reflect the reality of residential care provision, where a team of carers make decisions in the context of an agreed care plan. It needs to be made clear that care planning needs to follow the principles of the Act. A scenario along these lines would be helpful.
Decision making
Currently many of the people Sense works with find it difficult to get care where professionals feel safer not to act where the person can’t consent. We feel it is important that the Code emphasises that a decision not to act is a decision which must be made in a person’s best interests just as much as decision to act. Some scenarios on this would be helpful.
Chapter 1
Paragraph 1.9 The status of volunteers is unclear. Many voluntary organisations make use of volunteers who receive training and supervision to carry out their role. Although they do not receive payment, these people are in a very different situation from informal carers. Are they expected to have regard to the Code?
Chapter 2
Paragraph 2.19 Third bullet point mentions consulting family members on the best methods of communication. Care workers should be included here. For many adults, paid care workers know the person better than family who may visit regularly but no longer spend the majority of their time with their relative. This is particularly true of small care settings where staff work with small numbers of individuals over a period of time.
Chapter 3
Paragraph 3.35 The section on communication: aids for people with specific communication or cognitive problems. Whilst in general the Code is not prescriptive there are some circumstances where it is appropriate to make concrete statements. If a person has hearing difficulties then their preferred communication method should be used, rather than simply considered. We would suggest the following wording:
If the person has hearing difficulties, use their preferred communication method, using an appropriately qualified interpreter where possible.
A scenario might be helpful:
| A man is brought into hospital following a traffic accident. He is conscious but in shock. He is not able to speak, but is vocalising and gesturing, clearly in distress. Hospital staff assume that he has some form of learning disability and assess him as lacking capacity to make decisions about treatment for his injuries, although they hope that once he recovers from the shock they may be able to explain things to him with the help of an advocate. However, one of the nurses who has some basic British Sign Language thinks she recognises some of his gestures as BSL and tries signing to him. He immediately becomes calmer, and the doctors realise that he may not need an advocate after all. A qualified BSL interpreter is brought in, and the man is able to understand the decisions which need to be made about his treatment. |
Paragraph 3.42 At the end of the example some indication is needed as to how the clinician might go about assessing her capacity, since he does not know her communication methods. Perhaps adding:
The clinician enlists the help of a member of staff at the day centre who has worked with Ms D for some time and knows her communication well. Over the course of several meetings the clinician works with the member of staff to explain the treatment options. The final decision about Ms D’s capacity rests with the clinician, but he will have to rely on information from the staff member to make this assessment.
Chapter 4
Paragraph 4.6 We have some concerns about the scenario. This is a very common situation. The scenario gives no indication of how the dentist would decide what was in the person’s best interests. Although this may be different depending on the person’s individual circumstances, some indication of the sort of factors that the dentist must weigh up to assess this would be helpful. As it stands the scenario implies that having all your teeth taken out might be a reasonable approach in many cases. It does not mention other options, such as restraint, sedative or general anaesthetic to allow dental treatment to take place. If the example is there simply to identify the fact that the dentist is the decision maker then a less extreme example would be better. If it is intended to do more than this, then some indication of the different options and the factors the dentist must weigh up needs to be included.
Paragraph 4.13 In the scenario some more indication of what factors might need to be taken into account would be useful.
Paragraph 4.31 An example involving communication issues might be helpful here:
| A woman requires treatment for a medical condition. Her GP needs to explore the best treatment options. She is deaf with a visual impairment and communicates using a combination of pictures and her own personal sign language. She has lived in a care home for ten years. In order to communicate with her the GP asks a member of staff who has known her for some time and is very familiar with her communication to assist him in assessing her capacity. It appears that she does not have capacity to make the decision for herself, but the GP asks the member of staff to help him ascertain her wishes and feelings, and what might be in her best interests. |
4.21 – 4.23 The previous section mentions the possibility of people learning new skills in the context of people regaining capacity. We feel that it would be appropriate to also include reference to this possibility in the section on permitting and encouraging participation. A paragraph which reads:
Where a person is not currently able to make a day to day decision which is likely to be needed repeatedly, they may over time, with the right support be able to develop the skills to do so. Whilst others may need to make the decision on the person’s behalf at the moment, consideration should be given to supporting that person to develop the skills to enable them to make it for themselves in future.
Paragraph 4.38 The scenario used here is a fairly clear cut one illustrating past evidence of beliefs and values for someone who has had capacity to make financial decisions in the past. However there are areas where values and beliefs are less clear. One issue which has come up regularly in our consultation is the issue of religious belief. We have come across situations where a person has learning disability, but their parents have a strong religious belief and want their son or daughter to continue to practise that religion when they leave home. Is it reasonable to assume that the person can make their own decision about, for instance, dietary laws, or should they be assumed to follow the religious belief of their parents? An example would be helpful here.
Paragraph 4.56 and 4.60 We are concerned by the emphasis on seeking consensus. It needs to be made clearer that consensus and best interests may not be the same. Although this is stated in 4.56, paragraph 4.60 then appears to contradict this by stating that the first thing in cases of dispute Is to attempt a consensus.
At some point in chapter 4 a case study about behaviour as communication would be useful, perhaps in the section 4.14 – 4.17, considering all relevant circumstances.
| David is a deafblind man with learning disabilities who has no formal communication. He lives in a specialist home. He begins to bang his head against the wall and repeats this behaviour throughout the day. He has not done this before. Staff initially approach this by discussing how this behaviour can be managed to reduce the risk of injury. They come up with a range of possible interventions aimed at engaging him with activities and keeping him away from objects on which he could injure himself. They assess these as the least restrictive ways to ensure he is safe. However, they also call in a specialist in challenging behaviour who assesses the behaviour as communicative in nature. After investigating this further, it is discovered that he has tooth decay, causing extreme pain. Once this is treated the behaviour stops. |
We feel that a new section should be added to chapter 4 addressing the issue of care settings where staff are working within a care plan. This needs to make it clear that where a care plan is being drawn up for a person who lacks capacity to make decisions about some or all aspects of that plan, decisions should be made using best interests principles. It should be explicitly stated within the plan how the proposals are in the best interests of the person, and how this has been determined. Where the link between best interests and the care plan is clear, it will be reasonable for staff making day to day decisions about the person’s care to assume that following the care plan is in the person’s best interests. If this link is not explicit this will put care staff in a difficult position.
Chapter 5
Paragraph 5.8 We assume that this list is not exhaustive, but there are a number of additional areas where other acts need to be included in order to make the scope of the Act clear. Currently the implication of the list is that it is only physical assistance in relation to essential personal care which is included. Many people cannot access everyday activities or communication without physical assistance. This can be the major part of a care worker’s role. It also implies that administering medication is always carried out by medical practitioners, whereas day to day this is often done by care staff. We would like to see the following added:
- Acts of physical assistance with communication or taking part in activities such as leisure activities, or education.
- Administering medication
In general, support workers found it difficult to understand the sections on restraint, and in particular the sections on deprivation of liberty. A case study in the deprivation of liberty section would be helpful. Much clearer signposting of the relevant guidance on restraint and deprivation of liberty is needed, perhaps at the front of the section before Paragraph 5.37 to say that these paragraphs need to be read in conjunction with the relevant guidance.
Paragraph 5.41 The issue of consent to interventions such as blood tests or flu inoculation occurs regularly, and many people we work with do not receive necessary medical treatment because doctors will not carry out tests without consent. Current attitudes seem to see acting as a risky thing to do without consent, but failing to act and therefore not providing the person with treatment as a safer option. We feel it is important to emphasise that not acting is a decision which needs to be taken in the person’s best interests every bit as much as acting. A case study along the lines of the following would be very helpful:
| A deafblind man with learning disability has begun to exhibit challenging behaviour. Staff at his care home think this may be an attempt to communicate distress, possibly caused by a medical condition. They take the man to the doctor, who thinks that the behaviour may be caused by a hormonal imbalance. However, it is impossible to tell without taking a blood test, to which the person cannot consent and which he is likely to resist. It is possible that the blood test will be negative, in which case it was unnecessary. Therefore the doctor considers the possibility of not taking the test. However, he concludes that this would not be in the person’s best interests as if the problem is caused by a treatable condition, failing to treat it will cause the person harm. On balance it is in the person’s best interests to restrain him to take the blood test. The temporary restraint is proportionate to the likely harm caused by failing to treat a possible medical condition. |
Paragraph 5.44 We have concerns about the case study. Firstly the use of the word “capacity” in the first sentence is confusing as it does not refer to decision making capacity. Also, from the description of the case study this is not an issue of ability to control behaviour, but use of behaviour to communicate frustration. We are unhappy with the suggested use of an arm cuff since attempts to work with him to resolve his frustration may not be successful. We would not be happy to give the impression that he should wear it all the time. It should be made clear that the use of an arm cuff should only be used as a short term measure in exceptional cases.
Chapter 9
Paragraph 9.26 We feel that the point needs to be made that the withholding of treatment is also a decision for which an IMCA would be required. A case study might be helpful here:
| A 53 year old deafblind man with a learning disability has a growth on his neck. An operation is possible, but it would be painful, and is likely to require the person to be restrained for nursing care over a period of weeks as he recovers from the operation. Since the man has no formal communication it will be impossible to explain to him what is happening and why. Currently the growth is slightly inconvenient in that it restricts the clothes he can wear, but doesn’t appear to cause him any distress and is not malignant. The doctor feels it would not be in the person’s best interests to operate. However, if the person has no family or friends to consult then an IMCA must be involved, as a decision to withhold treatment is being made. |
Chapter 14
Paragraphs 14.43 and 14.44 are identical except that 14.43 includes the word welfare. We support the inclusion of welfare.
Chapter 15
Paragraphs 15.20 – 15.25 The issue of information for family members is an important one. Many families we support face the experience of being told that once their son or daughter reaches the age of 16 they are no longer a child and therefore the parents are not entitled to any information about their care as it is confidential. A scenario about parents of an adult being provided with confidential information in order to assist them in giving their views about best interests would be helpful here.
Regulatory Impact Assessment
The consultation asks for views on the Regulatory Impact Assessment produced for the Bill. The general impression given is that the Act represents good practice, so that the costs are likely to be minimal since the majority of service providers will already be following this. We disagree with this assessment. Sense carries out person centred planning and as such we feel that the Act requires little change in our practice. However, paragraph 1.10 makes it clear that people must be able to demonstrate that they are familiar (in broad terms) with the relevant parts of the Code. It is clear from this that all staff providing our services will need to have an understanding of the Code and how this relates to their own practices. We therefore have a need to provide appropriate training to our staff, which will have cost implications.
The training costs for the NHS are based on the assumption that nurses and care assistants will receive general awareness raising through their managers. We do not feel this is sufficient. Both nurses and care assistants will be required to be familiar with the Code. To do this they will require training.
We are also aware that not all those who work with people who may lack capacity currently follow best practice. One of the positive aspects of the Act is the potential to achieve a culture change in care services, which will not be achieved without training. Establishing best interests when working with people who do not use formal language to communicate can be time consuming. There will be costs associated with providing the necessary training. Commissioners also need to bear in mind the need to commission services which allow for best practice, which may have cost implications.
The section on voluntary organisations talks only about the need to acquaint themselves with the Act and inform members. Many voluntary organisations also provide services and will need to train staff. In line with the principle of full cost recovery, voluntary organisations will be expecting local authority commissioners to fund this training unless central funds are made available for this. Those which run help lines or advice lines will also need to train staff running these lines so that they can give accurate information and advice.
We would recommend that once the Code of Practice has been finalised, a further assessment of the training requirement for its implementation be carried out, with a view to making a more accurate assessment of the training requirements and their costs.
2 June 2006
Sense, 11 – 13 Clifton Terrace, London N4 3SR 020 7272 7774
