Linda’s Story

Linda Gregg was born in 1942 and married her beloved Roy in 1964. They moved to Kent where they had a happy and busy family life raising their daughter and son. Linda loved the outdoors, walking the family’s Afghan hounds, led an active life, had a large circle of friends and enjoyed many social events and travelling abroad.

Linda remained a devoted wife for 51 years, caring for Roy as he struggled with dementia, even though her own health was failing. She was a truly wonderful mother and fantastic grandmother, always full of fun and with a zest for life and remained positive throughout her very difficult final years.

In late 2014, at a time when she was caring for her husband, Roy, who was suffering with dementia, Linda started having problems with her balance, suffered constant dizziness and had some falls. As her condition continued to deteriorate, she was referred to various hospital departments including the falls clinic and numerous tests were carried out.

In August 2015, following a full body scan, Linda was diagnosed with ovarian cancer and surgery was successfully carried out. Sadly, Roy passed away suddenly a couple of months later.

In December of that year, Linda fell and broke her hip and following a period of respite care in a care home, Linda moved to full time residential care in March 2016. There were numerous falls and a general decline in Linda’s health at this time.

Tests continued, and finally in May 2016, Linda was diagnosed with Progressive Supra-Nuclear Palsy, a rare degenerative neurological condition affecting vision, balance, movement, speech, swallow, mood and behaviour. It is a progressive, incurable condition that results in gradual physical deterioration caused by the damage to nerve cells in the brain. There were also episodes of dehydration, delirium, and numerous UTIs resulting in hospital visits and admissions.

To aid nutrition and medication a PEG (percutaneous endoscopic gastrostomy) feeding tube was fitted which required a nurse to oversee five times daily. There were many healthcare departments involved in Linda’s care including speech and language, physiotherapy, occupational health and hospice care. In the last year of her life, she was fully dependent on nursing and care staff for all her daily living activities due to her complex needs.

Sadly, in November 2019, Linda suffered a stroke and passed away peacefully in her sleep.

After Linda moved from her home into her first dedicated care home suite, the staff made the family aware of the Funded Nursing care and NHS Continuing Healthcare. The family had no real involvement at this stage as the care home staff dealt with the application for Funded Nursing Care – a small weekly fixed contribution awarded to offset the cost of nursing care fees.

At the end of January 2017 Linda had to move care homes and her new care home fell under the auspices of a different NHS Clinical Commissioning Group (CCG).

On 27^th April 2017, Linda was assessed by the new CCG as to her eligibility for Funded Nursing Care (FNC) and NHS Continuing Healthcare (CHC). Having experienced a very streamlined and effortless assessment with the previous CCG, nothing really prepared the family for the inept, unprofessional attitude of the new CCG.

DST 1:

Linda was assessed for CHC funding by the CCG on 1st June 2017. Although the Multi-Disciplinary Assessment Team (MDT) had made a clear and unequivocal recommendation for fully-funded CHC, the CCG disregarded it and only awarded Linda the lesser FNC.

An appeal was immediately launched as the National Framework guidelines state that the MDT’s recommendation should be followed (unless there are exceptional circumstances).

DST 2:

Following the family’s intention to appeal the June 2017 decision, for reasons unknown, the CCG decided to complete another Decision Support Tool on 9^th January 2018 – some 6 months after the decision to appeal was made, putting the family through the strain of another assessment. The MDT’s findings again made a clear and unequivocal recommendation for CHC funding. But again, the CCG refused to accept the MDT’s decision and awarded only weekly FNC payments.

On 26^th July 2018, the family attended an appeal at a Local Resolution Meeting (LRM) – almost 12 months after the initial assessment (1^st June 2017) – to discuss the rationale on the previous Decision Support Tool (DST). It was revealed at the meeting that the case had been reviewed, but neither Linda nor her family were told about it. Breaches of the National Framework and errors within the DST were pointed out and acknowledged by the CCG – including getting Linda`s name wrong!

The family requested Independent Review of the decision by NHS England and engaged their local MP who asked to be kept informed. Another year passed by with Linda steadily declining.

DST 3:

On 7^th August 2018, the CCG carried out a further DST of Linda’s eligibility for CHC, to run concurrently with the appeal to review the CCG’s previous decisions to refuse CHC funding. The outcome of discussions with the healthcare professionals at the MDT again clearly and unequivocally recommended that Linda was well over the criteria threshold for CHC funding.

Nevertheless, by letter dated 27^th September 2018, the CCG advised that its decision remained unchanged and again refused to uphold the MDT’s recommendation in contravention of the National Framework. Of far greater concern was the fact that the Key Indicators of the 9^th January 2018 DST had been entirely rewritten by a sole Nurse Assessor, disregarding the MDT’s professional opinion and raising concerns of potentially serious malpractice!

Chris Gregg, her son, explains:

“Due to the complexity of mum’s increasing needs and the fact that the CCG were not adhering to the National Framework, the family decided that a formal appeal would have to lodged with the CCG in order to get an Independent Review carried out. Research was done and Farley Dwek Solicitors were contacted as having a specialist knowledge in this arena.

In February 2019, the family spoke to Andrew Farley and explained the difficulties encountered dealing with the CCG and the general situation surrounding mum`s health. Farley Dwek were instructed to investigate whether the case was worth pursuing, and also to provide the independent evidence should it merit an appeal. Once this was preliminary exercise was done, it was quite clear that the CCG had displayed complete disregard for National Framework, made grave procedural breaches, made errors of fact, and shown general incompetence (including several missed deadlines imposed by the National Framework which were subject to separate complaints en-route!).”

The reins were handed over to Farley Dwek by the family who felt like they had done as much as they could have done as “lay” people in this complicated process. Farley Dwek agreed to act on as a no win, no fee basis.

Chris continues: “Ruth Pople was the case manager at Farley Dwek and she immediately got to work amalgamating all the necessary paperwork and report compiling. As well as acting for the family in relation to the Independent Review Panel with NHS England, Farley Dwek also took a keen interest in the local appeal process and were present at the 2^nd Local Resolution Meeting with the CCG. Yet again, the CCG demonstrated their incompetence by not preparing for the meeting; managerial staff that had promised to be at the meeting failed to attend; and no explanation was given as to why the CCG had completely ignored the recommendations of all the MDT healthcare professionals employed to assess mum’s eligibility for CHC. It was decided that the LRM will have 28 days to reconsider the decision, and if it is not overturned, and mum awarded CHC, then NHS England will be involved for all 3 DSTs.”

The CCG responded and asked for the matter to be referred to NHS England (which was already happening).

“Sadly, mum passed away of her illness in November 2019 never got to learn how her case ended.”

In February 2020, Farley Dwek Solicitors represented the family at the NHS England Independent Review Panel (IRP).

Chris continues: “Ruth Pople from Farley Dwek was well prepared, professional and verbalised the families concerns at the CCG`s handling of the case – pointing out their multiple failures.”

Finally, in April 2020, the NHS England’s IRP upheld the appeal and confirmed that Linda was eligible for CHC contrary to the CCG`s previous decisions.

Chris: “Farley Dwek again took over and entered negotiations with the CCG, eventually coming to a substantial settlement which included backdated interest under the NHS Redress Guidance (2015).

Summing up the process as the member of family who dealt with the majority of the paperwork and the correspondence with the CCG, I can say that it is not an easy process to understand. Not only is it emotional, reliving all the heartache and having your loved-one discussed as case or a number, but the CCG will look to extend all the time limits put in place siting any number of excuses at their disposal. There appears to be no punishment in place for deviating from the National Framework.”

Chris says: “This process took three and a half years in total, and at all stages, I got the impression that the CCG just wanted me to go away and stop bothering them. Employing the specialist solicitors allows the family time to breathe and takes away the stress of the process. They are able to cut through all the red tape that the CCG try to tie you up with and have the backup of their legal status. Had I not engaged with Farley Dwek Solicitors, I very much doubt that the case would have gone in Linda`s favour.

I cannot recommend FARLEY DWEK enough should you find yourself in this unfortunate situation. They ring you when they say they will, they write to you with updates and keep you informed all the way.

I’d like to especially thank Ruth Pople and Jonathan Dwek who I regularly spoke to during the process.”