Patient Story


Equipment Referral

Equipment Van

Gwen is 77 and has a life limiting disease.  Her District nurse (DN) does not think she has more than a few months to live.  She is frail and unsteady on her feet and has had several falls.  She has been in hospital for 3 weeks.  Her husband is 83 and has arthritis and angina.  He does not like to leave his wife on her own. They have so far refused to have any outside help.

Gwen’s mobility is now so poor that her skin is damaged and she needs a pressure-relieving cushion.  The DN knows she can get this from the NHS store, but she has chosen to ask the Paul Sartori Foundation (PSF) to supply it because she knows we will deliver it today and she also hopes that our equipment staff will be able to persuade Mr and Mrs Jones to have some other help from PSF.

A Nursing Assistant delivers the cushion and manages to persuade the couple to consider having some help from PSF.

Assessment and Information Visit 

A couple of days later a PSF nurse visits to describe the services we can offer.  The couple agree that it would be useful if PSF could supply someone for 3 hours one morning a week to help Mrs Jones have a shower and enable Mr Jones to go out to the shops, bank and for his own doctor and hospital appointments.

Day Respite Package and Physiotherapy

At the first visits, the Nursing Assistant notices that Gwen is weak and unsteady.  Gwen feels this is because she spent so much time in bed in hospital.  A referral is made to the PSF physiotherapist who visits the same week and devises a programme of gentle exercise to improve Gwen’s balance and mobility.  She shows the PSF staff and Gwen’s husband how to help with the exercises.  She also orders a rollator frame which is delivered the same day.

This ‘day respite’ package continues successfully for 6 weeks.  Staff call the office after each shift, so all the team have built up a good picture of Mrs Jones’ situation and needs.

One Saturday evening, the DN calls the PSF team member on call.  She reports that Mr and Mrs Jones both have bad colds.  Mrs Jones also has a chest infection which has made her breathless, confused and incontinent.  The GP has suggested that she should go to hospital, but Mr Jones says he had promised he would look after her at home ‘until the end’.  He is very upset.

Rapid Response Package

In discussion with the DN, the on-call team member agrees to provide night care every night and 2 visits in the day until Wednesday.  This will give time for the antibiotics that have been prescribed for Mrs Jones to work and also give Mr Jones 3 days to rest and get over his cold.

For 72 hours PSF staff attend to Mrs Jones’s care needs and ensure that she gets her medication, plenty of nutritious fluids and adequate rest.  She slowly improves, but continues to need help with personal care and getting up to the commode several times at night.

Team Working

The DN persuades Mrs Jones to accept a referral to Social Services.  Funding is approved for a carer to visit morning and evening to help with washing and dressing and getting ready for bed.

Unfortunately, none of the agencies can find a carer to take on the work until the following week.  PSF agree to cover these shifts in the meantime.

PSF also continue to offer the 3 hours a week day respite to Mr Jones.  As he is finding it difficult to sleep properly at night, they also offer 3 nights cover a week for him to catch up on his sleep.

Mr Jones finds it is difficult to sleep, even when there is someone with his wife, because he is very tense and worried.  He agrees to see a PSF Complementary Therapist who trains him in some self-help techniques.

Mrs Jones is now experiencing increasing pain which the GP is finding difficult to manage, so he makes a referral to the Palliative Care Clinical Nurse Specialist (CNS) for the area for additional advice.

Last Days Of Life

Over the next 2 weeks, staff note a steady decline.  Mrs Jones is bed-bound, no longer taking food or fluids and is usually unresponsive.  Staff are worried that Mr Jones is becoming exhausted because he does not leave his wife’s side for fear that he will not be there when she dies.

The DN feels that Mrs Jones has only 1 or 2 days to live and asks for any extra help PSF can offer.  Mrs Jones can no longer swallow her pain medication, so the DN has set up a syringe driver to control her pain.

PSF offer longer periods of help in the day, so Mr Jones can have a break.  The PSF staff are able to persuade Mr Jones to take some rest, by reassuring him that they will call him straight away if his wife’s condition deteriorates.

The next night, the PSF Senior Nursing Assistant notes that Mrs Jones’s breathing has become shallow and irregular and her pulse is weak.  She wakes Mr Jones up and he is able to be by his wife’s side when she dies an hour later.

The Nursing Assistant carries out the formal verification of the death and calls the GPs on call to inform them.  The GP agrees that it is appropriate to remove the syringe driver and proceed with ‘last offices’. The NA then carries out ‘last offices’, with Mr Jones helping by choosing what to dress his wife in and doing her hair.

The NA offers to stay with Mr Jones until the morning, but he declines this.  She leaves messages informing the DN, GP and other agencies providing carers, of the death.

After The Death

The next day, the member of the Care Management Team who knows Mr Jones best, calls to see if there is anything we can help with and to arrange collection of the equipment

When PSF staff visit to collect the bed and other equipment, they chat to Mr Jones.  It is clear that the undertaker is helping with practical issues and neighbours and friends are providing support.  They leave him information about the PSF bereavement service

6 weeks later, the PSF Bereavement Counsellor writes to Mr Jones to offer bereavement support.  He accepts the chance to talk things over and finds the conversation very useful, but feels he does not need further support as he has a lot of support and understanding from friends.  The counsellor makes sure that he knows he can refer himself back for bereavement counselling at any time.

Sophie Thomas – May 2016

[1] The Clinical Nurse Specialist could be a Macmillan Nurse or a NHS CNS, depending on which GP service Mrs Jones is attached to.