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Disability Narratives

When we spoke to people about the help and support they received, many described the assistance they had got from healthcare professionals and state based schemes. We felt that it is important to share this as some people explained to us that it was not always obvious where to go for help or healthcare, especially for those people who have come to the University from various countries around the world. What follows is not a comprehensive introduction to the support available. However, by drawing on the stories of the people we spoke to we hope to provide some examples of what might be available to people in similar situations.

National Health Service

It was common for people with long term conditions or a disability to have sought care and support from the free National Health Service (NHS). For some this may have been through an emergency service, such as when Kevin had an ambulance called for a severe asthma attack. Others had long standing relations with specialists at the hospital that they would see on a regular basis, especially as they sort the best way to manage or control their condition.

Click for Susannah's interviewSusannah explains that the process of finding the right treatment can take a long time and involve a degree of trial and error.

 

For many we spoke to their General Practitioner (GP) was an important support. A GP is a doctor who can help with a range of health matters and can refer a person to more specialist healthcare services (see Resources for links to further information). For example, Stella said that when she has felt depressed she has gone to a GP, who has been able to provide access to both pharmacological and counselling options.

It can be helpful to remind people living with disabilities and long-term health conditions to go back to their GP if their condition changes or they become more unwell. As Verity recalled, her manager's encouragement to see her GP meant she got the help she needed in a timely way. Sometimes medication needs adjusting, or further support can be explored.

If you need to take a period of leave off because you are unwell, you will need to see your GP for a fit note (formerly sick note). Charlotte found it very helpful to discuss with her GP how long each note should be for: when she first experienced symptoms she only took a few days off sick here and there, "But after about two months into it we realised this was not sustainable". She was then able to get a note for a longer period of time off.

Click for Susannah's interviewGetting a week’s sick note helped Susannah break the cycle of migraines.

 

One of the specialist services GPs helped people access were the mental health services. This included referral to various forms of therapy or counselling. Frances said she had explored getting support from Talking Space Plus (see Resources for links to further information), a collaboration between the Oxford Health Foundation Trust, Oxfordshire MIND (a voluntary organisation) and Principal Medical Limited (PML), a GP-led not-for-profit organisation. People can self-refer to Talking Space Plus, or be referred by their GP for support with mild or moderate depression and anxiety. Available support includes self-help resources and group of individual therapy.

People with more severe or complex mental health issues may be referred to the Adult Mental Health Services. For Verity they provided a mental health care coordinator, whom she met regularly and who was someone she was able to telephone on occasion while at work.

Support outside the National Health Service

The University's Occupational Health Service may refer members of staff for short-term therapy or counselling, for which the University pays.

Some college staff have private medical cover through schemes such as BUPA, which can pay for treatment including surgery.

Some people explained that they sought support and treatment from healthcare professionals outside of the NHS system. Frances said she needed longer term support than was offered on the NHS or via occupational health and so paid to see a therapist privately. The long-term back pain that Sue had experienced meant she sought assistance from physiotherapists at various times.

Click for Sue's interviewSue explains how the physiotherapy she has paid for helped improve body and mind.

 

State funding

There were two main forms of state funding that were discussed in the interviews. The first was the Access to Work scheme. The second were benefits.

Access to work

The Access to Work Scheme is a national scheme, administered through JobCentrePlus, which contributes to disability-related costs at work. Support may include the provision of aids and equipment, assistance with travel to or in work, the provision of a support worker, communication support such as British Sign Language interpretation, or training such as workplace strategies coaching. The employer is expected to contribute to some costs, except for new starters who apply within six weeks of joining a new employer.

Expenditure by Access to Work helps disabled people to remain in employment, thereby benefitting the economy. Despite frustrations caused by the unwieldy administrative processes, members of staff have benefitted from Access to Work support. The Staff Disability Advisor can give further information, and can support staff through the application process.

For Frances the person paid for by Access to Work suggested strategies to help manage her dyslexia and dyspraxia.

Click for Maria's interviewMaria explains how Access to Work helped keep her at work and maintain her independence.

 

Click for Liz's interviewThe Access to Work scheme has provided Liz with various forms of support, including support workers who assist her with her teaching and research.

 

Click for Mary's interviewMary explains how the support workers that Access to Work provided helped her.

 

Click for Susannah's interviewAlthough she did not use it, getting Access to Work funding helped Susannah feel validated about the seriousness of her condition.

 

Click for Liz's interviewEven with support from Staff Disability Advisor, Liz found applying to the Access to Work scheme very stressful.

 


Benefits

There are various types of benefit available for people with a long term condition or disability. Some assist with the cost of living with a condition, others provide extra money if a person has a low income, for example if they are only able to work part-time. Some benefits are universal, meaning that anyone with a disability is entitled to them; others are means tested, so only people below a particular income level can receive them (see Resources for links to further information). It is therefore important to note that, as Kevin explained, even if a person does not receive a particular benefit they can still be "quite poorly".

What is available and what people are entitled to can be confusing. Maeve described how she was not sure what benefits she was entitled to and how she had only found out about a bus pass providing free travel that she was entitled to in one city, years after giving up driving. She went on to say, "And I do look on the internet sometimes, but it's all like just really a mishmash, and it's not - it's not clear. And the benefits system is just so opaque. I don't even know where to start, so I just don't bother. You know?"

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