Care Bill [Lords]

Written evidence submitted by the Alliance for Inclusive Education (CB 15)

Background information for Care and Support Bill amendments

The Alliance for Inclusive Education (ALLFIE) is a national campaigning and information-sharing network led by disabled people. ALLFIE campaigns for all disabled people to have the right to access and be supported in mainstream education. When ALLFIE talks about disabled people (and learners) we include disabled children and young people with Special Educational Needs labels. ALLFIE believes that education should support the development of physical, vocational and academic abilities through mixed-ability tuition in mainstream schools, so that all students and children have the opportunity to build relationships with one another. ALLFIE, our members and our networks believe that a fully inclusive education system will benefit everyone.

Whilst ALLFIE welcomes the Care and Support Bill, we echo Inclusion London’s concern that disabled people’s independence, their rights of control and choice, should be at the core of the proposed legislation. Nevertheless, our focus will be on Part 3 – the establishment of Health Education England as a statutory body with oversight of health care education and training.

Role of health-related education in championing disabled peoples' rights to health care provision

Education has a fundamental role to play in influencing disabled peoples’ experience of healthcare provision. Traditionally, healthcare education has taken a negative and medicalised approach to disability, supporting the idea that disabled people have less to offer than their non-disabled peers.

When healthcare workers have a negative perception of disability, it colours their judgement when deciding on appropriate treatment and services, since making those decisions involves judging what treatments and services are ‘worthwhile’ and cost-effective.

‘If she had been a normal young woman we would not hesitate to treat her.’ [1]

Withdrawing or withholding healthcare services has resulted in the needless deaths of disabled people, as a result of prejudicial and discriminatory decisions made on this basis. 22% of people with learning disabilities were under the age of 50 when they died compared with 9% of the general population. This is the reason that such prejudice and discrimination must be challenged from within the heart of health-related education. Health education underpinned by the social model of disability [2] would have a profound impact on how working health professionals understand disability, and inevitably lead them to challenge the barriers that disabled people face within health care services. Health education as it stands, fails to challenge the negative attitude of healthcare professionals towards disabled people.

Benefits of having disabled people as healthcare professionals

An inclusive workforce benefits both the healthcare workforce and healthcare service users. Dr Stephen Duckworth, a respected GP and consultant, states that education plays an influential role in shaping the attitudes of healthcare workers. In his PhD research Dr Duckworth found that medical students’ attitudes towards disabled people worsened during their medical education. [3] When disabled people are involved in healthcare education, then there is greater opportunity for such attitudes to be challenged, and more effective ways of working with disabled people can be established. [4] When disabled people are employed as healthcare professionals and trainers, non-disabled professionals benefit alongside healthcare users.

‘Disabled people add immense value to the student body. They help any group understand and appreciate diversity. It made a huge difference to the medical school when the first student in a wheelchair was admitted.’ Disabled people can make a unique contribution to patient care and, indeed, to medical research by providing direct experience and knowledge of particular health conditions or impairments. Patients often identify closely with disabled medical professionals who can offer insight and sensitivity about how a recent diagnosis and on-going impairment can affect patients. Such experience is invaluable to the medical profession as a whole, and illustrates the importance of attracting and retaining disabled students." [5]

There are still too many barriers facing disabled people who want to work in healthcare. While acknowledging the discrimination faced by disabled people both within the NHS and by healthcare service providers, our focus is on the provision of health education and training as outlined in Part 3 of the Care and Support Bill.

Disabled people remain significantly less likely to be in employment than non-disabled people.  In 2012, 46.3 per cent of working-age disabled people are in employment, compared to 76.4 per cent of working-age non-disabled people. [6] As the health profession includes a multitude of health care roles, overall statistics are not currently available. However, where role-specific statistics are available, there is clearly a chronic under-representation of disabled healthcare professionals. For example, only 5.5 per cent of medical students, that is around 2,100 people, declared a disability in 2007/8 [7]  

Barriers faced by disabled students wanting to enter the healthcare professions

Considering a Healthcare profession

Since the healthcare profession uses a medical model of disability, viewing disability as disabled people person’s problem, this affects the way that they are perceived, both as healthcare users and as providers. Focus on illness, disease, cure and restoring health leads to a view of disabled people as incapable, passive recipients of services by healthcare providers. Inverting roles, such as when a non-disabled patient consults a disabled doctor, may present a challenge to the status quo. Disabled people have qualified as health professionals, despite stereotyping and numerous other barriers. However, disabled people remain chronically under-represented in the healthcare work force. For this reason it is our hope that the new statutory body, Health Education England, will be under a duty to work with careers guidance and education institutions, as well as with professional bodies, to spread the word that disabled people are welcome to train and join the health profession once qualified.

Disabled people face a raft of obstacles to overcome, should they want to pursue a career in healthcare. These are met at many points in the process of gaining qualifications, from admissions procedures including entry requirements, to syllabus assessment, support provision while studying and fitness to practice.

Admissions

In common with many professions, historically application and selection for courses has become more stringent in recent years. Stricter and more specific criteria for application have further reduced opportunities for disabled people. A disabled medical student points out:

"Selection to medical school used to be done by straightforward interview. Now they have introduced psychometric testing and this might make it more difficult for disabled students unless adjustments are made." [8]

Competition to train as a healthcare professional has grown over the last decade, alongside the rising application to place ratio. As a result, universities are not only requiring students to meet higher entry requirements, but also to have a portfolio of extra–curricular activities and work experience that demonstrates a high level of commitment to their chosen healthcare profession. Alongside higher qualifications and developing a portfolio, students are also expected to sit additional standardised tests, such as the UK Clinical Aptitude Test (UKCAT).

‘When I applied for nursing degrees and diplomas I was asked to perform tasks such as drawing up fluid in a syringe and injecting it into an orange or putting a plaster on a doctor’s hand. I was rejected from many higher education nursing institutions on occupational health grounds, as I was assessed as not having the physical dexterity the job required. Despite being very dejected, I didn’t give up and qualified as a nurse from Birmingham University in 2001. I made sure as a student I performed as many clinical skills as possible so I could practise them while being supervised."

There is no evidence that raising the bar at admissions stage results in better qualified healthcare professionals, equipped with the right knowledge, skills and behaviours to work effectively.

"Having a degree does not necessarily make you a better nurse. However, it may make you better informed and would certainly address the issue of understanding evidence based nursing, which is crucial to all nursing professionals. Furthermore, as a degree prepared profession it gives the profession more kudos and equality amongst other healthcare professions…" [9]

The purpose of raising academic standards without evidence of improved service user outcomes is questionable in itself. The additional barrier this creates for disabled people, when applying to undertake healthcare training, is unacceptable. Since disabled people are likely to be disadvantaged in the process of gaining academic qualifications, as well as finding it harder to complete extra-curricular support activities or gain work experience, this is a tangible additional disadvantage, likely to prevent people with disability from being considered for places on healthcare courses.

To give an example, in order to gain relevant extra-curricular or work experience many disabled students require adapted equipment or personal assistance. However, funding is not available to meet these needs (such as from Access to Work) for disabled people to undertake work experience in a professional healthcare setting.

Tutors

The British Medical Association’s (BMA’s) Equality and Diversity in Medical Schools report [10] and the Department for Health’s document "Sharing the challenge, sharing the benefits – equality and diversity in the medical workforce" [11] identified improving disabled students’ access to medical education as one of the key challenges to providing equality and diversity in the medical workforce. The Allied Health Professional Support Service [12] has also identified that healthcare tutors and clinical educators can create barriers to learning. They do this by making assumptions about the ability of disabled people, based on their impairment and health condition. For instance, assuming that disabled individuals with a physical impairment will be unable to carry out medical procedures or will be too unstable to practice. Apart from making judgements based on stereotypical assumptions about disabled people, tutors may not be inclined or informed enough to meet disabled students’ access requirements whilst at university or in workplace training.

"The biggest obstacle so far has been my GP tutor. A failure of communication between him and the medical school meant that when I turned up for my first placement, he was not expecting the chair and the main meeting room, where drug rep lunches were held, was upstairs without a lift to get to it. At the end of my second week there, he told me I had to contact the dean. A fortnight later, my meeting with the Dean informed me that the GP tutor had decided (despite my occupational health clearance) that I was unfit to continue on the course! I was so angry with him and was glad that I could clear things up with ‘the guy at the top.’ Since then, my GP tutor has still been a huge problem. One week, we were spending the morning at opticians – five different places were chosen and the group split up so two went to each. Four of these places were wheelchair accessible. The fifth was not and that was the one he sent me to, and he was well aware that it wasn’t as well. I’m just annoyed that I have to put up with this attitude once a week for the whole year."

Support arrangements for disabled students completing healthcare courses required for professional registration

The funding of support and equipment provision, to enable disabled students to complete healthcare courses, may be complex and demanding, and may require accessing a variety of funding sources, as well as meeting assorted eligibility criteria. For instance, a disabled NVQ Health and Social Care apprentice may draw upon Access to Work funding for a work placement, so long as it is paid work, additional Learning Support funding (at the college’s discretion) and social care support, so long as the person meets the ‘critical’ FCAS criteria. In this way funding arrangements can prove prohibitively complex, and be a barrier to disabled people taking health education courses.

Whilst the Disabled Students Allowance is welcomed by disabled HE students, it is unfortunate that it does not cover all disability-related assistance, and the amount awarded may not cover all the expenses required to complete their courses. At post graduate level there is less funding available, often resulting in a shortfall. In such instances disabled students have no choice other than to rely upon charitable grants provided by charities such as the Snowdon Trust which is completely unacceptable. Asemah, from Leeds, is undertaking a Master of Pharmacy qualification at the University of Bradford. [13]

"I started Pharmacy in September 2009, first year went great and I loved every minute of it. Unfortunately, in second year I was really struggling to do assignments, directed study and use my laptop as my needs had changed since starting university, so I applied to the Snowdon Trust for some support in the hope that they could help.

I am truly grateful to the Snowdon Trust for granting me funding for an iPad and the Supernova software.

Words cannot describe how happy I was when I found out my application had been accepted as Pharmacy means the world to me and I would have found it so difficult without this support. The grant has made a huge difference to my studies.

My iPad is amazing. I am able to read my e-texts, as well as the British National Formulary and the Medicines Ethics and Practice allowing me to make prescriptions in class. I can view lectures as they are being presented making it easier to see and follow the tutors."

Funding is scarce or unavailable for disabled students taking OFQUAL and other professional body accredited courses, completed outside higher education institutions. So, disabled students completing a NVQ level 2 or 3 have NO ENTITLEMENT to a personal allowance to fund the cost of the equipment and support they may need. These funding constraints deny disabled students the right to access the support they need to complete courses required to gain professional healthcare status.

AMENDMENTS

1)

Purpose of Amendment

To have a role in promoting inclusive education practice in health related courses

New clause: Promoting Inclusive Education Practice

When HEE undertakes its functions, it will promote equality of access to health-related courses by:

(a) Working with admissions tutors to develop procedures that avoid disadvantaging disabled applicants from consideration for admission onto a health-related education courses.

(b) Providing resources and expertise to build the capacity of health education providers to deliver inclusive health-related courses.

(c) Providing bursaries and assistance for disabled learners who need additional learning support that is not available through Post-16 institutions or training providers, or to ensure there is no shortfall relating to funding for higher education students through the DSA.

(d) Working with education providers to make their health-related courses, including any work-related experience, and assessment methods accessible and inclusive for disabled learners.

(e) Working with professional bodies and awarding bodies to establish inclusive methods of assessing workers’ competences.

(f) Providing course syllabuses that are accessible, can be differentiated and promote anti-discriminatory practices.

Why is the Amendment needed?

In order to meet the purpose it was set up for, HEE should have a clear strategic role supporting both the development of inclusive health-related education, and the funding to make that a reality. Without this, disabled people will continue to be prevented from accessing courses. In particular, funding issues, such as the DSA ceiling, or the channelling of ALS funding into segregated courses, will continue to actively prevent integration.

What will the amendment do?

Place HEE under a duty to support the evolution of a diverse healthcare workforce by ensuring that health education provision is inclusive, and provides the disability-related financial assistance disabled people need in order to attend and complete such courses.

What will be the result of the amendment?

HEE will have a proactive role in supporting inclusive education practise throughout the health-related education provision.

2)

Purpose of Amendment

The HEE will be placed under a duty to develop and support a diverse workforce, representative of the general population. It is not acceptable to have a workforce that excludes a particular section of the population. Access to healthcare professions such as medicine is becoming increasingly restricted [14]

Proposed Amendment

Clause 86(1) Page 72 line 33 at end insert "HEE must exercise its functions with a view to ensuring that there is a diverse workforce that includes sufficient numbers of disabled persons with the relevant knowledge and skills to work as healthcare workers within the health service in England. Clause 86(1) Page 72 line 33 at end insert "HEE must promote inclusive health-related education and training for health-care workers"

Why is the Amendment needed?

We want the HEE to champion a diverse health care work-force and to promote inclusive education practise, whilst exercising its functions, such as commissioning health-related education courses.

What will the amendment do?

Impose a duty upon the HEE to promote inclusive education practise with the aim of having a diverse healthcare workforce that represents the general population.

What will be the result of the amendment?

HEE will be under a duty to promote inclusive education and a diverse workforce.

3)

Purpose of Amendment

HEE‘s objectives, priorities and outcomes must be to reduce anti-oppressive practice when health workers are working with disabled healthcare service users and disabled people in the workforce. Disabled people are far less likely to be given appropriate healthcare services due to the prevalence of negative attitudes amongst health care workers. Education is a vehicle for challenging unacceptable disablism within the health service.

Amendment requirement

Clause 87 line 24 at end insert

"HEE’s Education Outcomes Framework will include development and implementation of anti-discriminatory practices within the health-related professions."

Why is the Amendment needed?

Disabled people have recommended that health-related education that champions anti-discrimination practice is central in order for health care workers to have the attitudes and values necessary to ensure that disabled people have the same rights as their non- disabled peers to access health care services as the general population.

What will the amendment needed?

The amendment will redress the discrimination disabled people face in accessing health care services and health care education

What will be the result of the amendment?

Place positive pressure on health education providers and professional bodies to include disability/equality issues in their course curriculum and improve access to admission on healthcare courses.

4)

Purpose of Amendment

HEE will be under a duty to have regard for advice given by disabled people when exercising its functions.

Why is the Amendment needed?

Health care services and education must reduce disadvantage to disabled people, who are more likely to use health services than any other group. For example, two thirds of NHS clients are aged 65 and over and are likely to be disabled; disabled people, especially those with learning difficulties are more likely to face discrimination than other health care users. In order to properly inform the development of health care education and services, it is vital that disabled people are fully represented in the consultation process. [15]

What will the amendment do?

Clause 89 Page 75 at end insert "disabled people who will use health services"

What will be the result of the amendment?

HEE will be obliged to have regard for advice given by disabled people.

5)Purpose of Amendment

HEE and LETB will be placed under a duty to only commission education courses that are inclusive of disabled learners.

Amendment required

Clause 94 Page 79 line 12 insert at end "When HEE or LETB are commissioning health education courses, they will be inclusive of disabled students"

Why is the Amendment needed?

From our experience education and training providers commissioned to work with apprentices may not be inclusive of disabled learners when they are on apprenticeship placements. The training providers often do not have sufficient experience and skills to work with a diverse range of learners.

What will the amendment do?

Place HEE and LETB under a duty to commission education and training providers capable of training a diverse work-force, including disabled people who want to pursue a career in health care.

Why is the Amendment needed?

HEE and LETB will only commission health related education courses that are inclusive.

Medical Council (GMC) provides a number of case studies illustrating support provided to disabled students throughout their medical training. [16]

January 2014