HC 1048-III Health CommitteeWritten evidence from Sense (PH 81)

Summary of Evidence

Responsibilities for eliminating rubella and congenital rubella syndrome must be co-ordinated by one overarching body.

The needs of people with sensory impairments, including deafblind people must be recognised in national and local public health strategies, activities and information.

Initiatives to promote physical activities, including walking, and to tackle social isolation should address the needs of deafblind people.

Routine and emergency public health information must be disseminated in an accessible format.

Public health needs of deafblind people can only be met through the adequate provision of health and social care services.

1. Introduction

1.1 Sense

1.1.1 With over 50 years of experience, Sense is the leading national charity working with, and campaigning for, children and adults who are deafblind. Sense provides expert advice, support, and services for deafblind people, their families and professionals.

1.2 About deafblindness

1.2.1 Deafblindness is a combination of both sight and hearing difficulties. The complex impact of dual sensory loss means that it is a unique disability. Deafblind people face barriers with communication, access to information and mobility. There are an estimated 365,000 deafblind people in the UK, of whom the largest group are people over 70 with acquired dual sensory loss.

1.2.2 There are many causes of deafblindness. These include premature birth, birth trauma and rubella during pregnancy, which can cause babies to be born deafblind. Some genetic conditions also result in deafblindness. And any of us can become deafblind at any time through illness, accident or as we grow older. People who are born deafblind often have additional disabilities, including learning and physical disabilities.

2. The Abolition of the Health Protection Agency

2.1 Immunisation

2.1.1 Over the last 13 years or more uptake of the MMR immunisation has been lower than needed thanks to the very public debate about the vaccine’s safety. As a result, many hundreds of thousands of children are likely to be unprotected against measles, mumps and rubella. Over recent years, and even weeks, there have been measles outbreaks, putting unprotected children at risk of serious illness, disability and death.

2.1.2 Eliminating rubella and congenital rubella syndrome as a result of a universal two dose vaccine strategy remains both possible and desirable, but only if there is a co-ordinated focus on addressing inequalities in immunisation uptake, promotion of information about immunisation that addresses the concerns and questions of parents and professionals, commissioning and purchasing, delivery and uptake, and monitoring and surveillance. Responsibilities for achieving this will sit across Public Health England, the national commissioning board, local authorities, GPs, the Department of Health and the Joint Committee on Vaccination and Information. The responsibilities of all these agencies must be coordinated by an overarching body, which has a clear duty to do this.

3. The Role of Local Government in Public Health

3.1 Access to public health information

3.1.1 Given the barriers that deafblind people face in accessing information, it is vital that routine and emergency public health information is disseminated in an accessible way. This will include a range of accessible formats, as well as communicating face-to-face.

3.1.2 Case study

3.1.3 A.D. is fully deafblind and uses hands-on signing to communicate. One day she read in a newsletter from Deafblind UK that her drinking water had been contaminated for several days. She found out later that residents in the affected area were advised over radio broadcasts not to drink the water for the first two days and boil for a few days thereafter. A.D had been drinking the water the whole time. Fortunately, she did not suffer any health problems from drinking the water.

3.1.4 Many deafblind people are reliant on a communicator guide to provide practical help with everyday tasks such as dealing with mail. A communicator guide may only work a few hours every week, so in the case above, the deafblind person may have to wait several days before somebody can relay the message to them, by which point it may be too late. Therefore, it should be the role of local government to ensure that public health information is disseminated in an accessible way. Local authorities are already obliged by statutory guidance to keep a record of the deafblind people living in their area. Therefore, they should be aware of who would need to receive information in an accessible format.

3.2 The role of the Health and Wellbeing Boards

3.2.1 The boards will join up commissioning across the NHS, public health, social care and other services. To ensure that this is joined up, the local authorities and GP consortia will have an obligation to undertake the Joint Strategic Needs Assessment through the Health and Wellbeing Boards. Using the strategic needs assessment, the Health and Wellbeing Boards will have to develop a high-level joint health and wellbeing strategy that spans the NHS, social care and public health. For deafblind people there is an inextricable link between public health and social care.

3.2.2 We know that deafblind people experience difficulty in maintaining good health. There are several key factors that can impact on their health including social isolation and difficulty accessing physical activity, open spaces, transport and good quality fresh food. As the case studies below show, deafblind people need support with communication and mobility which can enable them take part in physical exercise, go shopping regularly for fresh food and maintain social contacts. This proves that there is a need for the provision of support from health and social care services to ensure the public health needs of deafblind people are met.

4. The Structure and Purpose of the Public Health Outcomes Framework

4.1 Access to physical activity

4.1.1 The percentage of adults meeting recommended guidelines of physical activity is a public health indicator. Deafblind people may be willing to take part in physical activity but it can be difficult for deafblind people to access such activities for various reasons. For example, classes often depend on being able to watch and copy a tutor and being able to go at a pace that may be too fast for people with communication difficulties. Also, hearing aids can fall out during some activities, induction loops may be unavailable or instructors and other participants could have a low level of deafblind awareness. And for many deafblind people, accessing such activities requires human communication and guiding support.

4.1.2 Case study

4.1.3 P is a deafblind man who wants to take part in physical exercise. He would need a communicator guide to assist him with this. When he mentions this as part of his social care assessment, he is told that this is a health need so he will not receive support from social care for this. When he asks his GP about this, he is told that there is no way health services will meet this need. He is supported by social care services to meet basic needs only, such as shopping trips, but this does not include any meaningful physical activity. He therefore remains at home all day for most days of the week - inactive and isolated.

4.1.4 The data for physical activity will derive from Sport England’s Active People Survey. This survey examines the amount and types of exercise people participate in, as well as breaking down the statistics into key demographic groups, including disability. However, it does not consider the support people with disabilities may need in order to access physical activity.

4.1.5 One of the public health indicators will be to measure the access and utilisation of green spaces. It is recognised that access to green spaces has a positive impact on mental health wellbeing and cognitive function through physical access and usage. This is also true for deafblind people; however, they may need support from another person to guide them to and around the green space. There are significant barriers to deafblind people taking part in a brisk walk related both to lack of human support, as well as inaccessible streets and other walking routes.

4.1.6 Case study

4.1.7 R.L. is a 71 year old man who has become deafblind. He was born with a moderate hearing loss which has increased and was diagnosed with retinitis pigmentosa, a progressive eye disease, in his thirties. He is now almost totally blind. He had an assessment ten years ago and was told he did not qualify for any social care provision as he lives with his sister who can support his social care needs. R.L. used to live an active life, but now he cannot take part in any physical exercise at all. He lives a five minute walk away from a forest and he would love to go for regular walks there, but he is not able to go without support from another person as he could easily fall over objects on the ground which he is unable to see. R.L. enjoys walking in the forest as he likes to hear different sounds and feel the different textures underfoot. He also likes the opportunities to greet other walkers. Overall, R.L. feels happy, although worn out, after going for a walk in the fresh air. R.L. has been looking for a volunteer who could to take him out for some exercise once a week, without success.

4.2 Older people

4.2.1 Older people with dual sensory loss make up the largest group of deafblind people. Evidence highlights that older people with dual sensory loss are more likely to develop certain additional health conditions such as stroke, arthritis, heart disease, hypertension and depressive symptoms. They are also more likely to have falls. Initiatives to promote physical activities, as well as prevent the conditions above should address the needs of older deafblind people. Falls prevention services are also vital to older people with dual sensory loss. However, without the right support from communicator guides, deafblind people are not able to access appointments at falls prevention clinics. Group exercise classes are a good method of preventing falls, as well as overcoming social isolation, but again older people with dual sensory loss will need support to take part in these activities.

4.3 Social isolation

4.3.1 Deafblind people all too easily become lonely and socially isolated; this affects deafblind people of all ages. Additionally, assumptions are frequently made that deafblind older people are considered to be “safe” in their favourite chair at home resulting in little other support or intervention. Without support, deafblind people become prisoners in their own home, isolated from friends and family with a lifestyle that threatens their physical and mental health. Action should be taken to ensure that people with sensory impairments can be involved in social inclusion activities. For example, community agents linking in with older people are bound to come across people with sensory impairments. Therefore they must be aware of the needs of older people with sensory impairments and use relevant communication skills.

4.3.2 Case study

4.3.3 B.J. lost her sight as a teenager and soon after she lost her hearing. She also now has severe mental health problems. She did receive a few hours support from the mental health team for a few hours a fortnight; however, this has now been cut. She says that a lot of mental health problems are due to social isolation. For B.J., it is not a question of thinking that she’ll see her friends or work colleagues next week and she cannot consider picking up the phone to give a relative a call. She often finds that she is stuck in her home for weeks on end without the possibility of going out to see somebody or even having anybody to visit her. If she does go out, she cannot chat to people as they are unable to communicate with her. B.J. feels that priority is given to washing and dressing, but the need for social interaction is completely ignored. B.J. is able to get herself washed and dressed; however, her mental wellbeing has deteriorated as a result of social isolation. Although she has had volunteers to support her in the past, she finds they are not always properly trained in the same way a specialist support worker would be.

5. Conclusion

5.1 Sense is happy to try and find deafblind people who can meet informally with members of the Committee and talk about some of the issues mentioned in this submission.

June 2011

Prepared 28th November 2011