"Penalised because I do not call on the medical services"

About: New Forest / New Forest Social Services NHS West Hampshire CCG Oakhaven Hospice

(as a service user),

We are very lucky in this area to have the wonderful Oakhaven Hospice/Coats Centre Day Hospice which my husband attends weekly to give me some respite.  Also offered is a bathing service which my husband also uses (we have no facilities at home).  Myself, I attend the Carers Day (one of the volunteers monitors my husband in a separate area in order that I can attend) - so nice to be with other people in same "boat" and who totally understand the pressure of 24/7 caring.  I could not manage without the help and kindness shown by this organisation.  The Hospice is a shining example of what can be achieved.

We also use the services of the NHS and Hants County Council but apparently not often enough.  These organisations seem to be governed by far too much "red tape" making it very difficult for staff to carry out/supply their duties and supply the necessary equipment to make life more bearable both for the patient and the carer.  It feels like the more a carer does to make life acceptable for the patient, the less help they get.  My husband needs both a special chair to sit in - we have to purchase this unless I let my husband develop stage 3 to 4 bed sores!!!.  Also a special wheelchair (the one we purchased is no longer suitable) - the waiting time is 18 months plus and the form for Continuing Healthcare is diabolical and totally unrealistic.

One seems to need to be "DEAD" before being eligible.  Even someone totally incapacitated (unable to stand, walk, feed oneself, needs total 24/7 care) is not eligible.  This needs investigating and made more realistic to being alive.

It seems like we are penalised because I do not call on the medical services for minor things i.e. damage to skin, sores etc.

This too is a ridiculous situation. 

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Responses

Response from Lucy Smith, Head of Nursing, Clinial, Oakhaven Hospice

Thank you for taking the time to post feedback for us. This is appreciated.

We at Oakhaven are pleased you feel the support we offer is so beneficial.

We are also sorry to hear of your experience and frustrations with other services.

Here at Oakhaven, we are currently undertaking a review of the support we provide for carers as we recognise it can be a very rewarding, yet very daunting and challenging role to fulfil. If you are interested in hearing more about our review, or would like to contribute to it, please do mention to member of the Oakhaven staff in Day Hospice.

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