Catherine and Hannah tell us about their experiences.
My name is Cat and I was diagnosed with relapsing remitting multiple sclerosis in February 2009. The federation for independent living has been an invaluable source of support and advice to me throughout my journey with this disease. Thanks to them I have been able to accept my conditions increasing impact on my life, learning how to adapt my life and accommodate this unpredictable condition, whilst still maintaining my independence which is so important to me.
I first learnt of the Fed through my MS nurse who could tell I had taken my diagnosis very badly and I had fallen into a deep depression. She recommended that I contact the fed for some counselling specially tailored to people who had just been diagnosed with a life long condition. Unlike the NHS, I was seen quickly and offered a flexible time slot that suited me. The counselling I received was amazing and gave me a whole new perspective to the situation I found myself in. I was able to accept that my life would inevitably change because of my MS, but I now felt I still had so much to offer the world.
My mood lifted, and I felt more confident and enabled to take control of my life, rather than be a victim of my MS. I had the confidence to talk to my work about how my MS would affect me and I even trained and "ran" the London marathon.
The years passed and my MS inevitably became worse. In December 2013 I felt no longer able to continue in employment. This was a very devastating decision but I felt supported by the Fed, who offered advice with ESA applications and made the process a lot less scary than it would have been if tackled by myself.
During this time I was also referred by my MS nurse the community neuro rehabilitation team as I was struggling to cope with day to day life. I was visited by an occupational therapist, neuro physiotherapist and a speech and language therapist who quickly identified my need for regular ongoing help with my personal care. Again at first I was completely opposed to the thought of having complete strangers coming into my flat and help me get up! This was a completely alien concept to someone who had always led a fiercely independent life!
Reluctantly I was referred to adult social services and awarded a PA budget. I was then allocated an advisor from the fed, who quickly opened my eyes to the great freedom and possibilities having a PA could have. She patiently talked me through the direct payments scheme, how it worked and all the support that the federation would offer me during every step of the process. At this point I was devoid of any confidence, having built the majority of me self esteem on my career achievements and independent nature. I thought that employing my own PA using direct payments would be too labour intensive and overwhelming for me to cope with. I had a multitude of questions racing through my mind; how do I know how many hours I should advertise for? How would I find a PA suited to my needs? How would I know I could trust them? How would I be able to keep track of their working hours and ultimately pay them regularly for their services?
My advisor could see the panic in my eyes, and took me slowly through each stage of the process. She identified when I had reached information overload and was happy to come visit me again at a later date so I had time to digest the information she had provided. Right from the beginning I felt in control of the process, and was able to dictate the speed at which we progressed through the information. We talked through my budget together, and came to an agreement on how many PA hours I should advertise for. It was explained to me that the Fed offered a payroll service which extinguished my fear over being unable to cope with the financial organisation of my PA's. We wrote the job description for my PA together, and when I felt ready to actually look for a PA, I was introduced to the PA notice board. What a revelation! A user friendly, safe and secure neutral place connecting people needing PA's with those would wanted to work as one! It was explained to me that I could choose to either advertise my need for PA by uploading a job descriptions and wait for applications, or I had the choice to be proactive and take control of the process, searching for a PA using a variety of filters to pinpoint the perfect candidate.
As this was my first time going through the process I choose to advertise the role. I was surprised how quickly and easily I could upload my job description, and loved the fact that I didn't have to give out my personal email address – applicants applied through the PA notice board, which in turn notified me when a PA had applied for the role I was advertising. All the applicants were kept in one place so I could easily review them together and make a decision for an interview shortlist.
What impressed me the most was that my fed advisor stayed supporting me during every step of the process. I was incredibly nervous about interviewing candidates and was so relieved when my advisor offered to accompany me on the meet ups. They had also thought of everything! – providing me with a comprehensive library of example interview questions which helped me greatly to prepare for the interview. After the interviews my advisor stayed with me and provided feedback on each candidate, helping me come to a final decision on which PA's to recruit.
Once I had chosen my candidate, the fed prepared a document folder with all the forms that I needed to fill in with the candidate, including a references request template, employment contract, P60 form, bank account details form and check list ensuring I had received copies of the relevant proof of identification/DBS documentation for security purposes. The process was so well thought out and efficient I was able to offer a start date of the following week to my chosen PA.
But the support did not end there; the fed also provided template timesheets, holiday forms and expenses forms. Like a well oiled machine, the fed had thought of everything, reassuring me that I had not forgotten something!
Now that I have my PA's, I have been discharged from my advisor Salwa, but I know that if I ever have any questions or queries she is just a phone call away and will always be happy to help.
Having PA's has impacted my life in a far greater positive way than I could ever have anticipated. I didn't realise how much confidence I had lost until I started interacting with my PA's. They boosted my self-esteem and enabled me to get out and about again and, well.......live!
Since becoming unemployed I had lost all reason to get out of bed and establish any kind of routine in my life. But now that I have PA's I actually look forward to our time together. Having a PA has enabled me to access the MS treatment centre in Southwick, meaning I can meet like minded people who understand the changes I am going through. Before my MS started to severely affect my balance I used to regularly attend Pilates, but had to give it up as I was unable to complete most moves and unable to walk home after exerting myself at a class! Now my PA has given me the confidence to start attending the Pilates sessions at the treatment centre, safe in the knowledge they are there to help me during/ after the class to get up off the floor and get home! I have even gained the confidence to go swimming, happy in the knowledge that there is the help I need to get out of the pool, dressed and home afterwards. The combination of regular swimming and Pilates has had a significant impact on my mobility – so much so that I recently got discharged from the neuro physiotherapy team! Knowing that I am keeping fit and strong without the need to rely on such an oversubscribed service such as neuro physiotherapy has made me feel so good and proud of myself!
Another aspect of my life that has changed significantly in my life since having PA's is my diet, on bad days I have been known to live on large bags of chocolate buttons, due to the lack of energy or inclination to attempt the preparation of something healthy and nutritious. Now on a weekly basis, I will go food shopping with my PA after discussing what recipes Hannah might try. She then bulk cooks me delicious meals to keep me going all week. I no longer rely on nasty tasteless microwave meals! This in turn has given me more energy and improved my health significantly. Since having PA's I have not suffered from any infections or viruses as I am actually looking after myself. With Hannah's I have also able to put into the practice all the advice that my speech and language therapist gave me regarding the avoiding of certain food groups to decrease my risk of choking.
Having a PA has added structure to my day and made me feel more normal. Thanks to Hannah my social life has been reignited. Now that Hannah helps me keep on top of housework, I can actually have friends come over to see me, without being embarrassed about the state of the carpet, or a massive stack of washing up. I have even been able to invite friends round to dinner thanks to Hannah's cooking. I can partake and contribute normally to activities, such as this years WI (Women's Institute) fete in which I was actually able to contribute a cake that Hannah and I made together, making me feel like a normal WI member!
The fed has been an amazing resource to me in the darkest, most difficult times of my life, and thanks to them, I have an incentive and purpose to continue making positive changes and improving my health. Having worked for a ruthless insurance company for 10 years, I would absolutely love to volunteer my time to such a great organisation who helps and enables so my many people. This is what I strive for in the future, a small thank you for the momentous support that I have and hopefully will continue to receive from the fed for independent living.
My name is Hannah, I'm 26 and I am a PA for people with a range of disabilities.
My first awareness of such a job happened just under a year ago whilst working as a community care assistant for a private care company. Whilst working for one particular client we had some shared duties with her PA staff. I had never known such a role existed and was immediately intrigued by how it worked.
Later that year I left the care company and was asked if I would like to work for one of my previous clients as one of her PA team. I jumped at the opportunity as soon as I could! At this time I also had a full time job as a baker and was working a lot of hours between my two jobs.
One day I sat and reassessed my working life and realised my current process was not sustainable. It was at this point that I decided to take the leap, leave the baking behind and set up as a full time PA.
It was at this point I had my first proper experience of the FED and its many facets. The main one that has been vital to me is the PA noticeboard which is an element of their larger website.
This online noticeboard creates a platform for people looking for PAs and those (like myself) looking for clients to safely and professionally assess their working compatibility. An element of the personal profile set out that I particularly liked was that you were given space to write (as formally of informally as you liked) about why you wanted to be a PA. I felt this was vital as it gave potential clients a real insight into your outlook on this role and what your motivation was.
Once I completed my profile (and after one or two technical hitches that did nearly have me tearing my hair out) I was sorted. I was ready to search through the advertisements on the noticeboard and could even search for specific elements, such as location, gender and age range.
I enthusiastically went to it that week and read a number of advertisement. I narrowed down ones I felt were well suited to my experience and my availability and then wrote cover letters to each one when I applied.
Within a week I'd gone from one client three and by the following week I had a forth!
I met some members of the FED team at interviews with potential clients, and saw how they supported our interactions. I found it a very positive to see how practically they were able to assist each individual.
I haven't had much direct contact with the FED since getting set up with my clients, but I do know they're there to provide advice and support if I need it.
On a personal level, becoming a PA has been one of the most positive things I've ever done. I look forward to working with each of my clients and always finish a shift feeling very rewarded. All of my clients are amazing individuals who I feel privileged to spend time with. Receiving positive feedback from them about how my help has improved their quality of life is hands down the most gratifying feeling I've ever felt.
I am now one of those lucky and rare people who get to truly love their job.