Carers Assessment

[Redjune1]

I’m due to have a carers assessment soon and I just wondered if anyone else has had one and what to expect? I’m in the UK.

[WifeLilyRose]

Be sure to describe everything you have to do as a carer on a particularly tough day. You will almost certainly have to explain what exactly PSP or CBD is and how the patient’s symptoms and needs are constantly changing but that it is impossible to predict how fast the progression will be. The recklessness/ impulsiveness of these rare neurological conditions often leading to falls, is very stressful for the carer whose sleep pattern will be very much affected and the patient will need constant supervision.

I asked for help towards cleaning and gardening as my husband could no longer help me in anyway. Also I asked for respite cover, so I could try to find some regular time for myself. This was the hardest thing to get. Then in the later stage I managed to receive CHC ( Continuing Health Care Funding ) with help from the palliative outreach team from the local hospice to apply.

The team on the end of the PSPA Phone Helpline are extremely helpful.

I wish you good luck with your application.

[Scottoppy]

The assessors are not there to see how good a carer you are, that is a given. They are there to see what you need and what help they can provide as a local authority. They are the safety net for you and your charge. Be honest with them ell what troubles you and what you need as backup. In my authority for example they have a sitting service, this means if I need a doctor's or dental appointment, they will provide someone to sit with my wife so that I can attend. This they call a priority call out. If I want to go to a social event, they will try to cover it but it has a lower priority. All that your other replies have said hold true. Don't leave it too late to apply for CHC funding assessment as the process is convoluted. Ask your Social Worker to do an initial checklist to assess the stage you are at. Good Luck. Keep strong

[LuisRodicioRodicio]

Hi Redjune1!

I'm sorry PSP/CBD/ etc. has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These kind of diseases manifests they self in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a physician.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the those notes-document with our experiences and our information are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.