Gauchers News Contents
In July 2000 Healthcare at Home carried out a survey of patients with Gauchers disease who receive Cerezyme through their delivery and nursing service. Seventy eight responded stating where they were infused and whether they were satisfied with the delivery and, in some cases, the nursing service.
One hundred and sixty-five question-naires were circulated by Healthcare at Home to patients with Gaucher disease who have enzyme replacement therapy. 78 forms were returned.
80% of patients receive their treatment at home with the rest either in hospital or at both locations. Of the 14 treated in hospital, the average frequency of hospital visits is every two weeks, making an average return journey of over seven miles and more than three hours for each treatment.
Of those having home treatment, 84% were 'self sufficient' with their infusions, either doing it on their own or with the help of a partner, parent, sibling or friend. 16% had the help of a nurse. However even those self sufficient still relied somewhat on nursing assistance with a third contacting a Healthcare at Home nurse for help in the previous six months.
Of the 62 respondents treated at home, nearly 95% received deliveries of Cerezyme and ancillaries directly from Healthcare at Home to their doorstep. The others had to collect supplies from their hospital, chemist or local surgery.
All respondents said they were happy with Healthcare at Home's service and would not swap to an alternative home delivery service given the option.
Although most indicated they were fully aware of the correct storage requirements for the drug, 6% stated that they might benefit from being reminded.
When asked if during the last six months, they had ever had problems making sure that their Cerezyme had been correctly stored between 2°-8°C, a further 6% indicated that this had been the case. Comments included: 'accidentally switched my fridge off'; 'fridge problems' and 'the fridge thermometer and Healthcare at Home's thermometer gave different readings on occasions.'
Healthcare at Home has indicated that 10 deliveries of Cerezyme had been returned to them in the past two years due to incorrect storage.
Only 7% of respondents felt that their driver's delivery service was poor with the rest being satisfied. One said: 'The driver assumes that everything being delivered is correct. I think he should offer to check the items with the person taking the delivery. It should then be up to that person to refuse the offer.' Healthcare at Home comments that this may be a valid area for service improvement but it should be borne in mind that some patients don't like the drivers crossing their threshold.
There is some evidence that patients having to collect their own Cerezyme might be less knowledgeable and receive a more poorly packaged product than those receiving deliveries directly to their doorstep.
Over a third of respondents did not need to contact Healthcare at Home in the previous six months while the majority made up to five calls each. Over 129 calls were made in total.
Most contacted customer services but about a quarter needed to speak to a nurse. Most callers wanted delivery information including requests for stock with a quarter wanting to change their delivery schedule. Only three calls were made for help with their
infusion. The vast majority of respon-dents were satisfied with this service.
When asked if respondents had ever run out of items in the past six months, two-thirds said they had not run out. Of those who had, many confessed that the error was theirs, for instance miscalculation of stores held, change of dose or unexpected difficulty in getting the needle in and therefore running out of butterfly needles.
In a few cases, the fault lay with Healthcare at Home when insufficient or incorrect stock was sent.
Almost everyone (95%) was pleased with their delivery arrangements although one comment was: 'Despite the one occasion when the delivery was incorrect and therefore delivered to a neighbour, all has been excellent'.
Healthcare at Home commits itself to a delivery time of +/-2 hours. However sometimes deliveries are delayed due to traffic conditions. When this occurred, over two-thirds rated the communication between Healthcare at Home and themselves as excellent or good. One request was: 'One delivery was late. I was kept informed by telephone to make sure I was at home'. Only two respondents said their deliveries were poor and in each case a one-off bad experience was to blame.
The goal of Healthcare at Home is to encourage Cerezyme users and their families to become as independent as possible regarding home infusions. However a small proportion occasionally relies on the help of nurses. When respondents were asked whether they had received any nursing input during the previous six months, a third indicated that they had. Reasons given were to:
All the respondents were satisfied with the appearance, courtesy and professionalism of the nursing service. One said: 'The nursing service is brilliant. My nurse really helped me to learn to infuse myself'. All but one found the on-call service satisfactory although a couple said they would like the nurse to contact them occasionally.
Of 29 who responded to the question: 'Are there any ways that Healthcare at Home can improve any part of their service', 21 praised the overall service. A further two said that they too would like to be infused at home. Additional comments included a request for evening deliveries and the problem of storing the huge empty box in which Cerezyme is delivered until it is collected the next time.
Healthcare at Home recently moved to new offices in Burton upon Trent so a few hiccups have appeared in their service. If this becomes a problem, please llet us know.
Gauchers News Contents
Source: Gauchers News March 2001.
© Copyright Gauchers Association 2001