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Sharon’s Story

In May 2022 Sharon was diagnosed with stage 4 Motor Neurone Disease. Find out how KEMP Hospice helped support her following her diagnosis.

In May 2022 Sharon was diagnosed with stage 4 Motor Neurone Disease. Having already been battling stage 4 cancer, Sharon’s diagnosis came as a complete shock and an unimaginable blow, with her symptoms initially thought to be as a result of her chemotherapy treatment.

She first noticed a minor slur in her speech in December 2021 and felt that her left side was slightly weaker. At first it was thought that these symptoms were a side effect of her chemotherapy, so her treatment was actually stopped for a short time. When the symptoms continued to worsen, Sharon was referred to a neurologist for nerve conductivity tests and blood tests. It was when she returned for the results in May that she was given the full diagnosis.

Finding Support

Having lived a relatively active and healthy lifestyle, the diagnosis of stage 4 MND came as a shock to Sharon and her family.

She didn’t really know where to turn. She was a member of a ‘Stage 4 Deserves More’ Facebook group and through conversations with others in the group about the pain she was experiencing, they suggested that she speak to her local Hospice which is KEMP.

Sharon’s sister Libby called KEMP to see if there was anything they could do to help. After arranging a referral via GP, she was given access to the Hospice incredibly quickly. Libby spoke on the phone on Thursday with Day Hospice Nurse Emma, who subsequently came to visit Sharon on Friday. Her first Hospice session was then on the Monday followed by a visit from the Occupational Therapist team Lisa and Ruth the next day.

Finding ways to stay Independent at Home

Following Sharon’s initial referral, the KEMP Care Services and Family Support Team did everything they could to support Sharon. Sharon’s decline since the diagnosis was incredibly rapid and as a result her home hadn’t been fully adapted to cope with her needs. Simple things like the ability to have a shower or bath were suddenly no longer possible. As soon as this was discussed with the KEMP team, they got to work and within days Sharon was in her own bath at home. Such a small thing that could be so easily taken for granted, meant more to her than she could ever express in words.

Since her referral to KEMP the Care Services team were able to support the adaptations in Sharon’s home to ensure she could continue to live there comfortably, for as long as possible. These included:

  • Spacers under Sharon’s sofa to help her get in and out of the chair
  • An aid for the toilet
  • A bath aid, a chair which sits over the bath so she could be lowered down to have a bath/shower
  • Bed aid and Pillow lifter
  • Stand / sit / lie chair for the living room

Finding new ways to have Fun

Sharon also enjoyed the support available at Day Hospice and had even surprised herself in finding an enjoyable new activity! She was never one for creative crafts, and her family thought it was hilarious that one of her favourite activities was the Creative Therapy session, it’s gave the family many laughs!. Sharon also enjoyed the soothing complimentary therapy and sat down with the Family Support & Bereavement Counselling Team. There were concerns about Sharon’s ability to swallow and respiratory system, so Chef Richard accommodated this for her dietary needs, always making sure she had a suitable yet delicious meal to enjoy. Once Sharon had her PEG fitted KEMP were on hand once again, supporting medications and nutrition via her PEG to ensure Sharon could still attend her sessions.

At only 53 years old, when Sharon first arrived at KEMP Hospice, she said she felt like she should be here as a volunteer, not as a patient. But what she came to realise was that everyone at KEMP treats you as a person, with utmost respect and far from being a sad place to be, KEMP Hospice was a shining light, giving her just a little bit of hope and to help her adapt to the challenges her diagnosis brought.

Sadly, Sharon passed away on 24th July 2022 aged 53 Years old. Sharon made her wishes very clear when she spoke with the team about this article that it should still be published in her memory, more importantly Sharon wanted others to understand how KEMP had provided so much support and the kind of support that was on offer to her and her family.