The treatment is working well but I know that there are some tell-tale signs and that I am slower than I used to be.
There is no answer to this question which is right for everyone, although we believe that the balance of advantage usually lies in telling the most important people such as your closest colleague and your immediate manager. If you are aware of ‘tell-tale signs’, the chances are that your colleagues at work have seen them too and are drawing their own conclusions. Their interpretations may be quite wrong and less complimentary than the truth! As we mentioned in Chapter 2, stress can make the symptoms of Parkinson’s worse and, once you stop having to cover up, you may actually be able to do your job better.
However, there will be circumstances, especially in a recession, when all jobs are at risk. Only you can know whether this risk is sufficiently grave in your own work situation to outweigh these arguments. We discuss these issues further in the answer to the next question.
What effects might my diagnosis have on my job security?
As we suggested at the end of the previous answer, much depends on the kind of work you do and the general level of job security in your firm or employment sector. Obviously any kind of long-term illness can have an effect on job security. If your Parkinson’s seems likely to have an early impact on your ability to do your present job, you should discuss this with your doctor to see if the treatment could be improved in any way. When you understand the medical situation fully, you should sit down and discuss the situation with someone who will help you to think through your options. You will find suggestions about whom this
‘someone’ might be in the answer to the next question. There is also a question further on in this chapter about how to obtain information on alternative jobs and retraining, and questions in Chapter 12 about the financial aspects.
What is important to note is that the Disability Discrimination Act 1995 now protects people with disabilities in a number of areas including employment. The Act covers discrimination against people who either have a disability or have had a disability in the past. Disability is defined as a physical or mental impairment, which has a substantial and long-term effect on a person’s ability to carry out normal day-to-day activities. Since the end of 1998 it has been unlawful for an employer with 15 or more employees to discriminate against disabled people in a number of situations, (the number is changing from October 2004). Unless the treatment can be justified, it would be unlawful for an employer to treat a person less favourably for a reason related to their disability. It would also be unlawful for an employer to refuse to make a ‘reasonable adjustment’ within the work place to enable a disabled person to work. There will be further changes to the Disability Discrimination Act in October 2004. The PDS Welfare and Employment Rights Department, Disability Rights Commission or the Disability Services Team at your local Jobcentre Plus office can advise further. The PDS also has information sheets on Employment (WB11) and The Disability Discrimination Act(FS53).
What action should I take if I have problems in coping with my work or if my employer is not very understanding?
There are really two questions here. The first is about coping with work. It would be helpful to begin by clarifying in your own mind what the problems are. Then you need to talk things over with a good listener, preferably someone who knows about Parkinson’s.
You may know someone suitable already but, if not, you could contact the Parkinson’s Disease Society and talk to either the Welfare and Employment Rights Department or the Helpline staff. There may also be a PDS community support worker in your area with whom you could discuss things. They will be able to help you identify other sources of advice and information which might include your doctor, your employer and employment disability services.
The second question relates to what you should do if your employer is not very understanding. The first actions would be those just described but you would need to add some consideration of the ways in which he or she is unhelpful, and the chances of change if the situation was properly explained. Try talking to your boss and see if your workload can be adjusted, or get an advocate to talk to your employer for you. The variable symptoms of Parkinson’s can cause misunderstandings if the person concerned has not come across it before. If your conclusion is that your employer’s attitude cannot be improved, then the balance would tip in favour of trying to find alternative employment or considering early retirement. The organizations mentioned in the previous question should also be able to advise.
See also the information about the Disability Discrimination Act 1995 in the previous question.
My husband is a qualified accountant but is unable to drive so is off work. Is there any way he could be helped to work from home?
Working from home is no longer uncommon – indeed, some people suggest that it is where nearly everyone will be working in the fairly near future. It can be particularly feasible for professional
people who do not require lots of expensive equipment. Home computers that can be linked to those in the office offer many new possibilities of work from home. Your husband should first talk to his current firm to explore what options they can offer.
If they cannot offer home work, he could approach the Placing, Assessment and Counselling Team (PACT) at his local Jobcentre Plus (listed under ‘Employment Service’ in the phone book or see the Jobcentre Plus website listed in Appendix 1). PACT has disability employment advisers who can offer a range of services to people with disabilities. It can help to be registered with the Employment Service as disabled and this can be arranged through these advisers. We understand that accepting the label ‘disabled’
can be a difficult step to take but, if your husband can get over this hurdle, he will gain access to many sources of help. To qualify for registration you have to be ‘a person who, on account of injury, disease or congenital deformity, is substantially handicapped in obtaining or keeping employment, or in undertaking work on his own account of a kind which would be suited to his age, experience and qualification’. The disability must be likely to last at least 12 months and the person concerned must be either in, or actively looking for, work and have some prospect of getting it.
Among the services available to people so registered are free permanent loans of equipment, which helps to obtain or keep employment and help with fares to work where driving is inappropriate.
If your husband is thinking of working independently from home, it will be worth doing some research into the possibilities and pitfalls. Any unemployed person can apply for help to set up a small business through the Business Start-up Scheme run by the Training and Enterprise Councils (TECs) or in Scotland by the Local Enterprise Companies (LECs). Any Jobcentre Plus will have more details. There is also an association called the Telecottage Association (see Appendix 1 for their telephone number), which provides information and a support network for people working from home.
The other issue raised by your question is whether you have explored all the options for helping him to get to work. You will find more about this in Chapter 11 on Getting around on wheels.
Is specialized advice available about possible alternative jobs and retraining?
Yes. As mentioned in the previous answer, your local Jobcentre Plus has a disability employment adviser who has special responsibility for helping people with a disability to find appropriate work. This includes retraining if necessary and any government schemes that may be appropriate for someone with Parkinson’s. Employment policy is in a state of constant flux and the criteria for admission to the various training schemes are detailed and complex, so it is best to discuss your personal requirements with the adviser.
There are also private careers consultants who offer individualized advice although, of course, there is a charge for their services. To locate them, look in your local Yellow Pages under Careers Advice or Personnel Consultants.
Alternatively you could approach the Welfare and Employment Rights Department at the Parkinson’s Disease Society (details in Chapter 15 and address in Appendix 1).