I have been receiving DLA for the past three years and was intially awarded both higher rate care and higher rate mobility components.  However, even three years ago the process was somewhat overwhelming and daunting. Especially, when I had never claimed any benefits before and never had contact with the DWP.  However, after numerous lengthy telephone calls, and appeals proceedure and the acquring of evidence for the process in hand my claim was awarded for a three year period.  Three years down the line I knew that my claim would be reviewed and this was always somewhere in the back of my mind, and indeed six months before the end of the intial claim I received the dreaded letter from the DWP and the gastly forms to fill. 

I was very fortunate enough to have a supportive and pro-active multi-disciplinary team around me as well as the support of family and friends.  It took nearly two hours to fill in those gastly forms and then to contact my hospital consultants, general practitioner, and social worker for evidence based reports.  I was adviced by my social worker to enclose the reports with the DLA renewal form and get further statements from those involved with my care including my partner, and friends who have supprted me stating what supprt they give, how often and the effect my diagnosis and illness has had upon my life and everyday activities.

After two weeks I received a letter stating that my forms had "not yet been received" and after numerous telephone calls to the DLA helpline, and several "I don't give a toss civil-servant attitudes" they acknowledged the receipt of the forms.   However, after six long weeks I received a letter from the DWP stating that my claim would remain the same and the award would be given indefinitely.  When I telephoned the DLA helpline for more information they stated it was because of the evidence submitted including the medical and social reports but also the statements for my partner, and those who knew me.

It is important to understand that until three years ago I was working full-time, in a professional position earning a very good London salary and living a very comfortable lifestyle.  However, after a period of hospitalisation for a serious HIV related illness and then numerous small but significant problems I started to feel pretty low and hopeless causing a sustained period of clinical depression and anxiety.  I was also a tad sick and tired of the relentless hospital based out-patient diagnostic tests and appointments, as well as getting used to a regime of medication taking, side-effect control and social limitations these impose, as well as managing my illness and the effects upon my daily everyday life.  I found that the DWP were somewhat concerned with physical symptoms rather than the effect that a diagnosis of HIV has  upon one's personal mental health and daily living. 

I can appreciate the problems that some people face in the review of DLA especially to those with chronic medical conditions.  I was fortunate to have a supportive social network and an excellent social worker with 15 years experience in HIV.  I also had a dynamic and forward thinking HIV consultant and understanding GP.  This I know is rare judging by the experience of others. 

My advice is:

• Accumulate as much information as possible inlcuding medical and social reports.  Statements from friends and family who know about your illness and the effects it has on your lifestyle.
• Enter into a dialogue with your health care providers and tell them how it impacts upon your life so that their reports reflect this.
• Ensure your own reflections upon your illness are recorded as detailed as possible and if possible give examples of such events.... one such thing is at night I was often waken by a feeling of fear and worry.

Finally, this website has given me a real sense that I was not alone and that there were other people facing the same if not worse situations.